ALEXANDER GRAHAM BELL ASSOCIATION FOR THE DEAF AND HARD OF HEARING

VOLUME 22ISSUE 2APR-JUN 2015

W W W . A G B E L L . O R G

YOU ARE NOT

ALONEGuide for Parents of Newly Diagnosed Children with Hearing Loss

Not only is Sensei designed to address the auditory and speech perception needs of every stage of childhood, it meets strict internal durability and safety requirements as well as international child safety standards. We’ve minimized any allergy risks by banning more than 200 potentially harmful materials, substances and compounds. In fact, Oticon is

unique as a hearing instrument manufacturer to have completely banned the use of phthalates (suspected endocrine disruptors) in our products. • Hypoallergenic• Nano-coated• Shock and drop resistant• IP58 classified for dust

and water resistance

• Free of Phthalates and PVCs• Biocompatible • Tamper-resistant battery door

standard for ages 0-3 Providing the best hearing care as well giving a high priority to children’s safety and well being is part of Oticon’s mission to ensure a better future for every child with hearing loss.

For more information about Oticon Sensei, contact your hearing healthcare professional or visit www.oticonusa.com/children

Your child’s safety is as important to Oticon as his development

We never compromise on hearing performance or child safety

Watch how Oticon designs products for safety and durability

ALEXANDER GRAHAM BELL ASSOCIATION FOR THE DEAF AND HARD OF HEARING 3417 VOLTA PLACE, N.W., WASHINGTON, DC 20007 // WWW.AGBELL.ORG

FEATURES

DEPARTMENTSIN EVERY ISSUE

3 Voices from AG Bell Making Our Voices Heard in the Media

5 Editor’s Note Roadmap for Living and Thriving with Hearing Loss

2 8 Hear Our Voices Midlife Awakening: How My Wife and I Became Bilateral Cochlear Implant Recipients

3 0 Focus on Chapters Mass AG Bell

33 LSL Knowledge Online Resources for Parents of Children Center Who Are Newly Diagnosed with Hearing Loss

2 Want to Write for Volta Voices?

7 Voices Contributors

8 Sound Bites

3 4 Directory of Services

4 0 List of Advertisers

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APR-JUN 2015 // VOLUME 22 // ISSUE 2

10 Reaching Out: How to Connect with Other Families of Children with Hearing LossSocial and group support plays a crucial role in a parent’s ability to cope with their child’s hearing loss diagnosis. There are many ways to connect with families who are also raising children with hearing loss. BY KRYSTYANN KRYWKO, ED.D.

16 All Waking Hours: Strategies to Maximize Hearing Aid Wear Tips and strategies for both parents and professionals to achieve optimal benefit from amplification for children with hearing loss through consistent and appropriate hearing aid use.  BY MICHELLE E. GRAHAM, M.S., CED, LSLS CERT. AVED

2 0 Hearing Testing: A Guide for Parents and Teachers Learn about the audiogram, the hearing testing process, and degrees and types of hearing loss from this primer.  BY DONALD M. GOLDBERG, PH.D., CCC-SLP/A, FAAA, LSLS CERT. AVT

24 EHDI-PALS: Linking Families to ServicesRead about the Early Hearing Detection and Intervention–Pediatric Audiology Links to Services website, which houses a pediatric facility directory and provides helpful family-friendly educational resources. BY ANNE OYLER, AU.D., CCC-A

Not only is Sensei designed to address the auditory and speech perception needs of every stage of childhood, it meets strict internal durability and safety requirements as well as international child safety standards. We’ve minimized any allergy risks by banning more than 200 potentially harmful materials, substances and compounds. In fact, Oticon is

unique as a hearing instrument manufacturer to have completely banned the use of phthalates (suspected endocrine disruptors) in our products. • Hypoallergenic• Nano-coated• Shock and drop resistant• IP58 classified for dust

and water resistance

• Free of Phthalates and PVCs• Biocompatible • Tamper-resistant battery door

standard for ages 0-3 Providing the best hearing care as well giving a high priority to children’s safety and well being is part of Oticon’s mission to ensure a better future for every child with hearing loss.

For more information about Oticon Sensei, contact your hearing healthcare professional or visit www.oticonusa.com/children

Your child’s safety is as important to Oticon as his development

We never compromise on hearing performance or child safety

Watch how Oticon designs products for safety and durability

Advancing Listening and Spoken Language for Individuals Who Are Deaf and Hard of HearingAdopted by the Alexander Graham Bell Association for the Deaf and Hard of Hearing Board of Directors, July 2013

ALEXANDER GRAHAM BELLASSOCIATION FOR THE DEAF AND HARD OF HEARING

3417 Volta Place, N.W., Washington, DC 20007www.agbell.org VOICE 202.337.5220TTY 202.337.5221 | FAX 202.337.8314

Volta Voices Staff

Director of Communications and MarketingSusan Boswell, M.A., CAE

EditorAnna Karkovska McGlew, M.A.

Advertising, Exhibit and Sponsorship SalesThe Townsend Group

Design and LayoutGRAPHEK

AG Bell Board of Directors

PresidentMeredith K. Sugar, Esq. (OH)

President-ElectTed Meyer, M.D., Ph.D. (SC)

Immediate Past PresidentDonald M. Goldberg, Ph.D., LSLS Cert. AVT (OH)

Secretary-TreasurerCatharine McNally (VA)

Chief Executive OfficerEmilio Alonso-Mendoza, J.D., CFRE

Corrine Altman (NV)

Rachel Arfa, Esq. (IL)

Jonathan Berger, Esq. (NY)

Evan Brunell (MA)

Kevin Franck, Ph.D., MBA, CCC-A (MA)

Donna Grossman, M.A. (VA)

Susan Lenihan, Ph.D., CED (MO)

Catharine McNally (VA)

Teri Ouellette, M.S.Ed., LSLS Cert. AVEd (IN)VOLTA VOICES Volume 22, Issue 2, Apr-Jun 2015 (ISSN 1074-8016) is published 4 times per year in March, June, September, and December for $50 per year by Alexander Graham Bell Association for the Deaf and Hard of Hearing, 3417 Volta Pl., N.W., Washington, DC, 20007. Periodicals postage is paid at Washington, DC, and other additional offices. POSTMASTER: Send address changes to Volta Voices, Subscription Department, 3417 Volta Pl., N.W., Washington, DC 20007, 202/337-5220 (voice).

Claims for undelivered issues must be made within 4 months of publication. Volta Voices is sent to all members of the association. Yearly individual membership dues are $50. Volta Voices comprises $30 of membership dues. Subscriptions for schools, libraries and institutions are $137/year domestic (rate includes online access to The Volta Review), $150/year international (rate includes online access to The Volta Review) or $190/year both domestic and international (rate includes online access to The Volta Review as well as a print compilation volume of the journal).

Copyright ©2015 by the Alexander Graham Bell Association for the Deaf and Hard of Hearing, Inc., 3417 Volta Pl., N.W., Washington, DC 20007. Articles published in Volta Voices do not necessarily reflect the opinions of the Alexander Graham Bell Association for the Deaf and Hard of Hearing.

Acceptance of advertising by Volta Voices does not constitute endorsement of the advertiser, their products or services, nor does Volta Voices make any claims or guarantees as to the accuracy or validity of the advertisers’ offer.

PUBLICATIONS MAIL AGREEMENT NO. 40624074 Return Undeliverable Canadian Addresses to: P.O. Box 503, RPO West Beaver Creek, Richmond Hill, ON L4B 4R6

Submissions to Volta VoicesVolta Voices welcomes submissions from both AG Bell members and nonmembers. The magazine is published four times annually. Its audience consists of individuals who are deaf and hard of hearing, parents of children who are deaf and hard of hearing, and professionals in fields related to hearing loss (audiology, speech-language pathology, psychology, otology, social services, education).

For submission guidelines and to submit content, visit the Volta Voices page at www.agbell.org.

Subjects of Interest• Technology—related to hearing loss,

new technology, improvements to or problems with existing technology, or how people are using existing technology, accommodations.

• Education—related to public or private schools through post-secondary education, new approaches and teaching methods, legal implications and issues, etc.

• Advocacy—information on legislation, hearing health, special or mainstream education, and accessibility.

• Health—audiology issues relating to children or adults with hearing loss and/or their families and friends.

• Action—stories about people with hearing loss who use spoken language as their primary mode of communication; deafness need not be the focal point of the article.

Editorial Guidelines The periodicals department reserves the right to edit material to fit the style and tone of Volta Voices and the space available. Articles are selected on a space-available and relevancy basis; submission of materials is not a guarantee of use.

Transfer of Copyright The revised copyright law, which went into effect in January 1978, provides that from the time a manuscript is written, statutory copyright is vested with the author(s). All authors whose articles have been accepted for publication in Volta Voices are requested to transfer copyright of their articles to AG Bell prior to publication. This copyright can be transferred only by written agreement. Without copyright ownership, the Alexander Graham Bell Association for the Deaf and Hard of Hearing cannot issue or disseminate reprints, authorize copying by individuals and libraries, or authorize indexing and abstracting services to use material from the magazine.

Art Submission GuidelinesVolta Voices prefers digital images over original artwork. When submitting electronic files, please provide them in the following formats: TIF, EPS or JPG (no BMP or GIF images). Digital images must be at least 300 dpi (at size).

Letters to the EditorLet us know how we are doing. Write a Letter to the Editor, and you could see your comment in the next issue.

Media KitVisit www.agbell.org and select “About AG Bell” for advertising information.

Want to Write for Volta Voices?

On the cover:YOU ARE NOT ALONE: Guide for Parents of Newly Diagnosed Children with Hearing Loss

SUBMIT ARTICLES/ITEMS TO:Volta Voices Alexander Graham Bell Association for the Deaf and Hard of Hearing 3417 Volta Place, N.W. • Washington, DC 20007Email: editor@agbell.org

Submit online at www.agbell.org

2

VOICES FROM AG BELL

On March 13, AG Bell undertook an unprecedented public relations outreach campaign through a print advertisement in a USA Today editorial

supplement which reached more than 1.3 million readers. An accompanying editorial article by Ted Meyer, M.D., Ph.D., AG Bell president-elect, drew public attention to newborn hearing screening and outlined first steps for parents of children with hearing loss.

The article and advertisement were part of the MediaPlanet Vision and Hearing Health campaign, an annual initiative to raise awareness about vision and hearing loss and new technologies, and to provide expert commentary on the latest developments in the field.More than 450,000 copies of the USA Today supplement were distributed in top media markets—New York, North Central Florida, Dallas, Carolinas, Philadelphia, San Francisco, Nashville and Boston— and shared digitally, reaching even more readers.

To keep the campaign going, we are offering state chapters a branded, customized version of the print and digital ads in multiple sizes for use on their website, e-newsletters or other materials. We hope that this collaborative effort will have a ripple effect—and we encourage state associations to let us know how many people saw the message so that we know our total impact. Please share the ad and editorial through your personal social media networks.

The ad shows a child who is deaf using hearing technology to listen, talk and share his feelings with those closest to him. In a close-up photo, a parent and child are framed by their dialogue:

“Today, my deaf son heard me call his name. He spoke the words ‘I love you.’” Readers are encouraged to find out how they can help a child who is deaf or hard of hearing to listen and talk by contacting AG Bell.

Lisa Cantwell, who is featured with her son Billy in the advertisement, said that she was “excited to be able to spread the word on just how much success a child with hearing loss can have with early intervention, involved parents and cochlear implants or hearing aids.” Billy, now 8 years old, exemplifies that success. After his hearing loss was identified through newborn hearing screening, he received cochlear implants at 11 and 13 months of age, and his language is on par with peers.

The ad is simple in concept with a compelling image and a powerful message that will go a long way in dispelling the myths that continue to persist in the minds of the public and the media. Over the years, people who are deaf and hard of hearing have been commonly portrayed in entertainment media as communicating through American Sign Language. As an example, Marlee Matlin, who is most known for her Oscar-winning performance in “Children of a Lesser God,” recently starred on “Switched at Birth,” which features co-star Katie Leclerc and a cast that uses sign language.

The portrayal of people who are deaf in the media poses challenges for aspiring deaf actors who use listening and spoken language as well as the public image of people who are deaf and hard of hearing. AG Bell hosted a special reception for the No Limits for Deaf Children production of “Silent NO MORE.” The talented cast shared powerful personal stories of growing up with hearing loss, including actor John Autrey II, who said that acting roles are difficult to find because he is labeled as a “deaf person” and asked to

sign and not use his voice. John said that the entertainment industry does not think about writing parts for people who are deaf and listen and talk. John believes that his voice should be heard because life is not about limits—but having no limits.

We need to hear the voices of people growing up with hearing loss today who use listening and spoken language and to see public images that portray accurate reflections of their lives and achievements. This is seen quite clearly in many of today’s social media groups, in which comments related to children who have received cochlear implants and who listen and speak absolutely on par with their peers continue to chastise the children’s parents for not using sign language. Through a social media campaign on the AG Bell Facebook page and in our Facebook group, we will be spotlighting a series of notable people who are deaf and hard of hearing and who utilize listening and spoken language. We encourage you to contribute to the campaign by commenting with your own experiences, sharing throughout your network, and suggesting others to profile.

At the 2015 AG Bell Listening and Spoken Language Symposium next month, please join me in celebrating the remarkable successes of young people with hearing loss today, recognizing the challenges they face, and in exploring ways to contribute to their future through our professional skills and talents.

Sincerely,

Meredith Sugar, Esq. President info@agbell.org

Making Our Voices Heard in the Media

VOLTA VOICES APR-JUN 2015 3

“It’s been such a tremendous journey for us as parents of a deaf child to see how he’s

developed, and none of this would have been possible without Advanced Bionics and the

devices that they’ve created. To say that it’s been a miracle really doesn’t do it justice.”

— Mark Edwards, father of Harrison, AB recipient

To learn how AB’s advanced cochlear implant technology can help your child hear their world, succeed

in school, and achieve their dreams:

Text AGBell to 38470866.844.HEAR (4327) • hear@AdvancedBionics.com

AdvancedBionics.com/AGBell

027-M535-03 ©2015 Advanced Bionics AG and affiliates. All rights reserved.

In 2013, AG Bell developed and executed the Family Needs Assessment survey to assess the core needs of families as they progress through the major phases of their

child's journey. The results of the survey found that the first weeks and months after a child’s diagnosis with hearing loss are emotionally difficult for families, as they need to pull resources to make important and lasting decisions early in the child’s life. The survey underscored a fundamental need for families: the critical need for access to timely, unbiased, relevant and culturally sensitive information.

Despite available information, families often reported a sense of feeling alone and expressed a desire for a roadmap to help them manage a difficult, complex and often confusing net of information and services.

This issue of Volta Voices strives to provide essential and practical information to parents and professionals as they work together to find the optimal formula for each child with hearing loss following newborn hearing screening and early identification, proper and timely diagnosis, and adequate access to services—the fundamental pillars that AG Bell advocates for on a daily basis. Parents also need hope and emotional support as they embark on the journey of a lifetime.

When Krystyann Krywko's son was diagnosed with late onset hearing loss six years ago, shortly after his third birthday, it was the fear of the unknown that she and her husband were most worried about. Social and group support plays a crucial role in a parent’s ability to cope with their

child’s hearing loss diagnosis. Krywko's article provides many suggestions for ways parents can connect with families who are also raising children with hearing loss and begin to build and access the support that they need.

Optimal benefit from amplification may only be achieved with consistent and appropriate hearing aid use. It is recommended that children wear their devices all waking hours to access auditory information present throughout the day. But what is a parent to do when a child continually pulls out her/his hearing aid(s), loses it in the mulch at the playground or feeds it to the dog? Michelle Graham provides both parents and professionals with strategies, tips and information to strive toward increased daily weartime of hearing aids and facilitate optimal benefit for the child.

Donald Goldberg, immediate past president of AG Bell and a luminary clinician and academic in the field of hearing loss, provides readers with a primer on hearing testing. He walks us through the audiogram, the hearing testing process as well as types and degrees of hearing loss. The article should help get you on solid ground with the important information and terms that you need to know if you want to have a productive and substantive conversation about hearing loss.

Anne Oyler writes about the EHDI-PALS website, which houses a pediatric facility directory and provides helpful family-friendly educational resources.

Our “Focus on Chapters” profiles the Massachusetts chapter of AG Bell. Evan Brunell, president of the chapter from 2010-2015, writes about the importance of fostering social connections between children and teenagers who are deaf and hard of hearing, and how the chapter shapes its activities around social events,

which go beyond connecting peers with hearing loss to one another and include the whole family.

John Ojeda, an adult with hearing loss, writes about his and his wife’s journey to becoming bilateral cochlear implant recipients within months of each other, providing inspiration and hope for many who are looking to access a richer world of sound and life in the mainstream.

Thank you, as always, for reading. We hope this issue, together with previous such issues of Volta Voices, will stay on your shelf for many years to come and the edges of the pages will be curled from leafing through in times of need for information, tips and perhaps a little pick-me-up.

As we develop Volta Voices’ online presence, we are building the magazine’s online archive by topic. Check out the New Parent archive at www.agbell.org/NewParents, which contains a myriad of timeless articles from previous issues of the magazine aimed at serving as resources for parents of newly diagnosed children with hearing loss.

Kind Regards,

Anna Karkovska McGlew, M.A.Editor, Volta Voices editor@agbell.org

Roadmap for Living and Thriving with Hearing Loss

EDITOR’S NOTE

VOLTA VOICES APR-JUN 2015 5

“It’s been such a tremendous journey for us as parents of a deaf child to see how he’s

developed, and none of this would have been possible without Advanced Bionics and the

devices that they’ve created. To say that it’s been a miracle really doesn’t do it justice.”

— Mark Edwards, father of Harrison, AB recipient

To learn how AB’s advanced cochlear implant technology can help your child hear their world, succeed

in school, and achieve their dreams:

Text AGBell to 38470866.844.HEAR (4327) • hear@AdvancedBionics.com

AdvancedBionics.com/AGBell

027-M535-03 ©2015 Advanced Bionics AG and affiliates. All rights reserved.

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QUESTIONS? COMMENTS? CONCERNS?Write to us: AG Bell 3417 Volta Place, N.W.Washington, DC20007 Or email us: editor@agbell.orgOr online:www.agbell.org

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THEY SAID NOTHING COULD BE DONE ABOUT HEARING LOSS.GOOD THING HE DIDN’T LISTEN.What drove Dr. Graeme Clark to invent the first multi-channel cochlear implant over 30 years ago?What kept him going when others called him crazy and sometimes worse? His father was profoundly deaf and growing up, all he wanted was to find some way to help. His invention came too late for his dad, but for the hundreds of thousands of people whose lives he helped change, it’s been nothing short of a miracle. Let there be sound. Today they can hear because one man chose not to listen. Read their stories at Cochlear.com/US/Hear.Or to connect with a Cochlear Concierge call 800-483-3123 or email Concierge@Cochlear.com.

VOICES CONTRIBUTORSVOICES CONTRIBUTORS

Evan Brunell is a civically engaged businessman who has profound hearing loss and wears cochlear implants. He is a member of the

boards of directors of the Alexander Graham Bell Association for the Deaf and Hard of Hearing and Clarke Schools for Hearing and Speech, and volunteers actively in his community. Recently, he was honored with the 2015 Outstanding Advocate of the Year award from the Massachusetts Commission for the Deaf and Hard of Hearing. Brunell served as president of the Massachusetts chapter of AG Bell from 2010-2015. Currently, Brunell represents the fourth generation of his family’s business, overseeing marketing and accounts for three separate companies. Previously, he was a baseball journalist from 2003-2014, most notably as a national baseball columnist for CBS Sports and correspondent for ESPN. Brunell created the first online sports network, presiding over the company for six years. He holds a bachelor's degree in journalism and a master’s degree in public administration from Northeastern University in Boston, Massachusetts.

Donald M. Goldberg, Ph.D., CCC-SLP/A, FAAA, LSLS Cert. AVT, is a Full Professor in the Department of Communication at the

College of Wooster in Ohio and a Consultant, Professional Staff, for the Hearing Implant Program at the Cleveland Clinic’s Head and Neck Institute. Goldberg earned his Ph.D. at the University of Florida (UF) in 1985; master’s degree in Speech-Language Pathology at UF in 1979; and his bachelor’s degree in Biology/Education at Lafayette College in Easton, Pennsylvania in 1977. He has been a university/college professor, the co-director of one of the largest cochlear implant centers in the United States, and is the former executive

director of the Helen Beebe Speech and Hearing Center in Easton. Goldberg is the co-author of Educational Audiology for the Limited-Hearing Infant and Preschooler: An Auditory-Verbal Program (Pollack, Goldberg, & Caleffe-Schenck, 1997). He has written several book chapters, published numerous research-based and clinical publications, and has been a presenter throughout the United States and Canada, along with speaking opportunities in 13 other countries in Europe, Asia and Australia, including New Zealand.

Michelle Graham, M.S., CED, LSLS Cert. AVEd, is the Lead Early Intervention Therapist at St. Joseph Institute for the Deaf

(SJID) in St. Louis, Missouri. She is an experienced Listening and Spoken Language Specialist (LSLS®) in the field of deaf education, currently providing in-person family sessions and working with school-age children via SJID’s ihear Internet Therapy program. She maintains certification in the area of Deaf/Hearing Impaired in several states in addition to Missouri certification in Early Childhood Special Education and Cross Categorical Disabilities: Mild/Moderate. Graham is adjunct faculty at Lindenwood University in St. Charles, Missouri, teaching a graduate course related to characteristics of young children who are deaf and hard of hearing.

Krystyann Krywko, Ed.D., is an award-winning education writer and researcher, specializing in hearing loss and how it

affects children and families. Both she and her son were diagnosed with hearing loss one year apart. She loves to engage with parents and educators in order to dispel misunderstandings about hearing loss and to focus on the strengths of children who

are deaf and hard of hearing. She is the founder of Kids with Hearing Loss (www.kidswithhearingloss.org)—an initiative to provide families a place from where they can move forward with strength.

John Ojeda recently received bilateral cochlear implants at Medical University of South Carolina (MUSC). Prior to that,

he was a longtime user of hearing aids with exceptional speechreading skills that served him well throughout his IT career. Ojeda decided to pursue cochlear implantation as a permanent hearing solution after reaching the end-of-the-rope with hearing aids. Since his activation of both cochlear implant processors, he has been enjoying and capitalizing on his newfound hearing with just about every aspect of everyday life. He continues to work with his audiologist at MUSC in finding ideal cochlear implant mappings for different listening situations and he also reaches out to other recipients for new mapping strategies. Ojeda resides in Charleston, South Carolina with his wife of 20 years and two children. He enjoys spending time with his family and traveling. He can be contacted at ci4hearing@gmail.com.

Anne L. Oyler, Au.D., CCC-A, is an associate director of Audiology Professional Practices for the American Speech-Language-Hearing

Association. Her primary interests include pediatric and educational audiology issues. Oyler’s earlier professional experience includes university clinic supervision, auditory research in the areas of speech perception and hearing aids, and consultation for an early hearing detection and intervention program.

VOLTA VOICES APR-JUN 2015 7

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NEWS BITES

8 WWW. AGBELL .ORG

AG Bell Ad in USA Today Reaches 1.3 Million Readers AG Bell reached more than 1.3 million readers in March with a print advertisement in a USA Today editorial supplement to raise awareness that children who are deaf and hard of hearing can listen

and talk. An accompanying article in the supplement by Ted Meyer, M.D., Ph.D., AG Bell president-elect, drew public attention to newborn hearing screening and outlined first steps for parents of children with hearing loss.

AG Bell was thrilled to be included in the supplement, which is part of MediaPlanet's Vision and Hearing Health campaign, an annual initiative that aims to raise awareness about vision and hearing loss, new technologies and to provide expert commentary on the latest developments in the field. More than 450,000 copies of the USA Today supplement were distributed in top media markets— New York, North Central Florida, Dallas, Carolinas, Philadelphia, San Francisco, Nashville and Boston— and shared digitally, reaching even more readers.

"This ad conveys a simple—but emotionally powerful— message by highlighting the abilities of children who are deaf and hard of hearing today to listen and talk in everyday interactions," said AG Bell president Meredith Sugar. "It goes a long way in dispelling the myths that continue to persist in the minds of the public and the media. I hope that the AG Bell community will join us in raising awareness by sharing the advertisement and this message through their personal and social networks." Go to www.agbell.org/usatoday to learn more.

The ad can be customized for AG Bell state chapters to distribute and get the word out about listening and spoken language. Contact info@agbell.org to request a copy of the ad with your state association contact information.

AG Bell Members Rally to Support Hearing Aid Tax Credit

Andy Bopp, Hearing Industries Association executive director, Corrine Altman and Senator Heller.

In spite of a snowstorm that closed federal agencies on March 5, Corrine Altman, AG Bell board member, and longtime AG Bell member Shon Halacka teamed with the Hearing Industries Association to visit Congressional representatives and staff urging them to support the Hearing Aid Tax Credit (HATC). Although many meetings were cancelled, the hearing health advocates persevered through snow and slush to urge Congress to support the legislation.

Advocates urged Senators to co-sponsor S.315 which was introduced by Senators Dean Heller (R-NV) and Amy Klobuchar (D-MN), and urged Representatives to co-sponsor the HATC which will be introduced by Reps. Devin Nunes (R-CA) and Mike Thompson (D-CA) in the House of Representatives.

Shon Halacka at the U.S. Capitol advocating for support of the Hearing Aid Tax Credit. credit: shon halacka

COMPILED BY: ANNA KARKOVSKA MCGLEW, M.A.

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VOLTA VOICES APR-JUN 2015 9

Hearing Aid Insurance Mandate Resource CenterAG Bell has developed a Hearing Aid Insurance Mandate Resource Center to help you find out whether your state requires insurance coverage for hearing aids, and to support advocacy efforts if your state does not. Visit www.agbell.org/HearingAidInsuranceMandateResourceCenter to learn about states pursuing legislation and AG Bell parent initiatives, and to download a list of helpful resources to get you started. Please email info@agbell.org to help AG Bell maintain current information, and to let us know what is happening in your state.

AG Bell Board Member Receives AwardEvan Brunell, member of the AG Bell board of directors and president of the Massachusetts chapter of AG Bell from 2010-2015, was recently honored with the Outstanding Advocate of the Year Award by the Massachusetts Commission for the Deaf and Hard of Hearing in recognition of his leadership, service and accomplishments as an advocate for individuals with hearing loss, particularly by fostering social connections for children and youth with hearing loss, mentoring through Clarke Schools, and building a strong and thriving state chapter. Brunell received the award at the Deaf and Hard of Hearing Constituents' Day at the Massachusetts State House on April 14, 2015.

Silent NO MORE Story BookSilent NO MORE, a theatrical production of the No Limits Theatre Group out of Culver City, California, took place on March 28 at the John F. Kennedy Center for the Performing Arts in Washington, D.C., to great acclaim. Silent NO MORE is a collection of inspiring life stories by 11 cast members whose ages range from 18 to 60 who share their personal experiences, struggles and successes in growing up deaf and hard of hearing and learning to communicate. The featured performer of Silent NO MORE is Kathy Buckley who has hearing loss and is a five-time American Comedy Award Nominee for Best Stand-Up Comedienne. The performance has been adapted in book form so that the stories which were presented at the Kennedy Center (and many more) can be shared to a broader audience. The book will soon be available through the AG Bell bookstore at www.agbell.org/bookstore.

Smithsonian Exhibit Opening: Hear My VoiceA new exhibit has opened at the Smithsonian National Museum of American History—Hear My Voice: Alexander Graham Bell and the Origins of Recorded Sound. The exhibit honors Dr. Bell's work on the development of sound recording at the Volta Bureau, AG Bell's headquarters, in the 1880s. Through documents, recordings, laboratory notes and apparatus from the Volta Bureau, you will learn about the early history of sound recording in the United States and hear some of the earliest sound recordings ever made. The exhibit is open from January 26, 2015 to October 25, 2015. Visit americanhistory.si.edu/exhibitions/hear-my-voice to learn more about the exhibit.

Photo Caption Correction

From left to right: John Fithian, president and CEO of National Association of Theatre Owners; John Stanton, chair of AG Bell Public Affairs Council; Anna Gilmore Hall, executive director of Hearing Loss Association of America; Andrew Phillips, policy counsel at the National Association of the Deaf; I. King Jordan, eighth president of Gallaudet University; Randy Smith, CEO and counsel for Regal Entertainment Group.

Correction: In the Jan-Mar 2015 issue of Volta Voices in the Advocacy in Action column on page 24, the original photo caption inadvertently omitted I. King Jordan and misidentified Randy Smith.

Online and Social Media

CONFERENCE

Support Group

10 WWW. AGBELL .ORG

REACHING OUTHow to Connect with Other Families of Children with Hearing Loss

By Krystyann Krywko, Ed.D.

SUMMERCAMP

When our son was diagnosed with late onset hearing loss six years ago,

shortly after his third birthday, it was the fear of the unknown that we were

most worried about. The familiar guideposts we had followed with our

daughter were now gone. We didn’t know any children or adults with hearing

loss. We didn’t know if our son would eventually be able to communicate with

us. All we knew was that he had moderate to severe bilateral sensorineural

hearing loss and that he would need to wear hearing aids. Other than that,

we were clueless when we left the audiologist’s office.

VOLTA VOICES APR-JUN 2015 11

12 WWW. AGBELL .ORG

This state of not knowing is difficult for a parent to be in. You feel that you are supposed to be the one in charge, and you are supposed to be the one that protects and watches out for your child. How can you do this if you are not even sure of the challenges that your child will face?

It can be isolating when your child is first diagnosed with hearing loss. “You go through your pregnancy with a group of friends, or you attend an infant and toddler group at the same time as your friends. Then you get this diagnosis and all of the stuff your kids had in common, you suddenly don’t have anymore,” said Christina Danese, mother of Jack who wears bilateral cochlear implants. “It’s not that way intentionally, but all of a sudden some of the people you know are not sure how to act around you and they slowly drop out of your lives.”

Why Connections Are ImportantWhat has been amazing about our son’s hearing loss journey is the way we have been included and accepted in a community of parents who are also striving to find out what works best for their child.

Social and group support plays a crucial role in a parent’s ability to cope with their child’s hearing loss diagnosis. Increased social support is shown to have a positive effect on stress in families of children with disabilities, specifically those of children who have hearing loss (Lederberg & Golbach, 2002).

“Connecting in person was vital to my family’s sanity,” said Tina Morris, mother of Karsen who has bilateral cochlear implants, and founder of a Facebook support group. “My immediate family was very supportive and always had open arms when I needed a hug, but they could not relate to the roller coaster ride we were on. I had two children, one with extra needs, and a husband in the military who deployed for six months at a time. Connecting allowed me to talk about experiences, share what we were learning, compare notes, and just vent. You can learn so much when you listen to others walking on the same path.”

The social resources available to families come from both natural and artificial networks. Natural networks are made up of relatives, friends and acquaintances, whereas artificial networks refer to new contacts with other parents in a similar situation such as within a parent group as well as with professionals (Hintermair, 2006). As parents move through the different stages of raising a child with hearing loss there is a reliance on both natural and artificial networks at different times.

“When people are uneducated or unsure about hearing loss they don't know what to say or do,” said Eileen Solla-Diaz, mother of MJ who wears bilateral cochlear implants. “No one in our family really understood what we were going through but they tried to be there for us. Our new hearing loss family helped us the most. They are the ones that I continue to turn to for advice as my son gets older.”

Making connections in our lives is probably the single easiest way to enhance our emotional and social wellbeing. This is because what makes us human is our sociality, our desire for and focus on social connections, loving relationships and meaningful interactions with others (Carter, 2015).

How the Need for Support Changes over TimeThe support a family receives, especially around the time of diagnosis, significantly impacts parental acceptance of the diagnosis, as well as parents’ feelings towards other services, communication methods and the hearing loss community (Koester & Meadow-Orlans, 1990).

Because of the many appointments and therapy sessions in the early years when a child is first diagnosed professionals and health care providers are often perceived as a support network, rather than family or friends (Lederberg & Golbach, 2002). The Family Needs Assessment, conducted by AG Bell in 2013 reinforces the idea of how a single professional can make a difference in the life of a family. Many parents reported that a “single individual or organization often made the difference between feeling lost and feeling on track.”

The Family Needs Assessment also found that the availability of emotional, counseling and support resources in the local area varied widely. Only two-thirds of respondents chose to use these resources if they were available to them at the time and 62 percent of those who used services rated them favorably. Even when local support services were available, many parents noted

"Connecting allowed me to talk about experiences, share what we were learning,

compare notes, and just vent. You can learn so much when you listen to others

walking on the same path."

6'

5'

4'

3'Sam 3

Sam 4

Sam 2

Sam 1 2'

1'

VOLTA VOICES APR-JUN 2015 13

that in the early years they often felt overwhelmed with the amount of time required to provide adequate support to their child, and the effort required to connect with support groups was a barrier.

However, for many families, the support they seek can become more difficult to find when their child ages out of early intervention or preschool program. As children enter mainstream programs, it can become more difficult to find ways to connect with other families and children with hearing loss. Yet, this is the time when families often need understanding and support the most. Families are in a constant state of change as family members grow older and challenges become more complex. Both children and parents find themselves in need of different levels of support.

There are many ways that you can begin to connect with families who are also raising children with hearing loss and begin to build the social support that you need.

Conferences Conferences are not just for hearing loss professionals. Parents also attend so that they can meet other parents of children with hearing loss, connect with hearing loss professionals, and keep up to date on the latest developments in education, therapy and technology. Some conferences are more focused on professional development, rather than parent networking, so just make sure you know what you are looking for before you register.

Conferences can consist of large multi-day events held by national organizations, such as AG Bell, Hearing Loss Association of America (HLAA), Hands and Voices, and the Early Hearing Detection and Intervention (EHDI) meeting. Local chapters of these larger organizations also hold smaller one-day conference events that are held throughout the year. Take a look at chapter websites for your state to see what might be offered locally.

Many conferences, such as the biennial AG Bell Convention and the annual Clarke Schools for Hearing and Speech Mainstream Conference, have strong family components where children and/or teenagers are immersed in activities while the parents attend various educational workshops and network with other parents. AG Bell chapters host one-day workshops that balance educational content with plenty of opportunity for networking and social interaction.

Support Groups Support groups often become the one place where parents feel they can be understood. A support group can be one that is created formally and hosted by a school, an audiologist or other professional, or an organization.

“The support I received from the groups I joined was amazing,” said Ms. Solla-Diaz. “I immediately joined AG Bell and HLAA, and enrolled my child in a program focused on listening and spoken language. The manufacturer of my son’s cochlear implant put me in touch with parents through their network. Meeting this community of parents, children, adults and speech therapists gave us the courage and strength to move forward more positively. We started to understand hearing loss

and realized that it's not the end of the world. Our son will hear and speak. He will grow healthy and be successful in school. That was my goal. To get MJ to start kindergarten on time! And that he did!”

Support groups also can be informal where a group of parents meet for coffee after school drop-off once a week, or a monthly play group get-together.

“The support group that helped me the most began when I took the initiative to walk across the parking lot at my son’s listening and spoken language school and talk with the parents of the older students,” Morris said. “It was truly then that I realized the value of the parent-to-parent relationship. It wasn’t anything that was organized, but I learned more in those hours of speaking to ‘seasoned’ parents than any website, workshop, doctor, therapist or book could have taught me.”

“The connections we have with other parents help so much. No one understands what it’s like to have children with hearing loss better than them. It has been wonderful to have so many parents who understand the issues that come up in school and with coaches,” said Karen Gintoli, mother of four children (three of whom have bilateral hearing loss and wear hearing aids).

Online and Social Media Opportunities Distance can be a challenge for many families of children with hearing loss. In many instances families live in rural areas and there is little opportunity to find local support, or they might be the only child in an urban school district that has hearing loss. Thankfully, there are numerous technological advances that can help parents and children initiate and maintain connections across the miles. Google+ Hangouts and Skype calls can help parents and children stay in touch with therapists, friends and mentors.

As your child grows older, they can begin to keep in touch with other children they may have met through Facebook, Instagram, email or texting. “There is such a bond that your child develops when they meet other children with hearing loss, it’s hard to put into words,” Gintoli said. “Some of my children’s best friends are the ones they met at the American Hearing Impaired

"Support groups also can be informal where a group of parents meet for coffee after school drop-off once a week, or a monthly play group get-together."

14 WWW. AGBELL .ORG

Hockey Association (AHIHA) summer camp. They might only see them once or twice a year but texting and social media help them to stay in touch and to offer support to each other.”

Organizations, such as AG Bell, also offer long-distance support in the form of their Facebook group, which provides a safe place for parents to connect and learn about listening and

spoken language options. “My son was born in 2004 with a mild hearing loss, then lost his hearing at 14 months and received cochlear implants at 16 months and 2½ years,” said Samantha Elliott-Kennell. “We wanted spoken language for our son. I love AG Bell because of the research articles

that are released about hearing loss and spoken language. I have connected with a few great families through AG Bell, as we all have similar goals for our children.”

Despite all the benefits of connecting long distance, Morris, founder of the Facebook group “Parents and Caregivers of Children with Cochlear Implants,” offers a word of caution. “After seeing many other groups become battlegrounds for

communication choices and a lot of misinformation being shared, I decided I wanted to start a group that focused on quality information. I encourage new parents to do their own research and/or find a small support group of parents/mentors and take those conversations offline and work on forming relationships.”

Summer CampsThere are many summer camp opportunities for your child, but there is something special when your child connects with other children with hearing loss. “One of the best things about our camp,” said Dana Selznick, an itinerant teacher of the deaf and co-founder of CampedUP in New York City, “is that it provides an environment where the kids don’t need to teach staff or other campers about their hearing loss. It allows them to have the chance to just enjoy camp worry-free.”

There are a variety of summer programs that cater to children and families with hearing loss. Some, like the AHIHA summer hockey camp, provide opportunities for children with hearing loss to connect with others while playing a sport they love. Others like the AG Bell Leadership Opportunities for Teens (LOFT) program and Clarke Schools' Summer Adventure combine leadership and academic enrichment with traditional camp activities. Still others like the Hands and Voices Family Summer

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Camp in California, and the biennial North East Cochlear Implant Convention provide opportunities for the entire family to spend time connecting with other families for part of the summer.

Attending summer camp after a recent diagnosis can also be an important step in adjusting to your child’s hearing loss. “We are contacted by many families that have children who are newly diagnosed,” Selznick said. “These families are seeking a summer program that will give their child a chance to gain confidence and pride in their hearing loss.”

These are just some of the ways that you can connect with other parents and families. When I look back at all the parenting connections I have made over the years, I know that I am stronger and have been enriched by having others that understand my family and my child.

The benefits of connecting with others will not only have an impact on you as a parent, but these opportunities can also bring

a sense of empowerment and belonging to you and your child. “I had no connections with other children like myself,” said Gintoli, “I was a shy child and never felt comfortable talking about my hearing loss. Once my daughter was diagnosed with hearing loss, I knew right away that I did not want her to have the same isolating experience, so we looked for opportunities for her to tell other children about her hearing loss, show off her hearing aids and meet other children.”

And that is all we really want for us and for our child, a place to belong.

REFERENCESAlexander Graham Bell Association for the Deaf and Hard of Hearing (2013).

Family needs assessment: Successes and challenges, listening to their voices. Washington, DC: author.

Carter, C. (2015). The sweet spot: How to find your groove at home and work. New York: Random House.

Hintermair, M. (2006). Parental resources, parental stress, and socioemotional development of deaf and hard of hearing children. Journal of Deaf Studies and Deaf Education, 11(4), 493-513.

Koester, L., & Meadow-Orlans, K. (1990). Parenting a deaf child: Stress, strength, and support. In D. Koester and K. Meadow-Orlans (Eds.), Educational and developmental aspects of deafness (pp. 299-320). Washington, DC: Gallaudet University Press.

Lederberg, A., & Golbach, T. (2002). Parenting stress and social support in hearing mothers in deaf and hard of hearing children: A longitudinal study. Journal of Deaf Studies and Deaf Education, 7, 330-345.

At Clarke, children who are deaf and hard of hearing learn to listen and talk.Children served by Clarke use advanced technologies, including cochlear implants and hearing aids, to maximize their access to sound. Clarke teachers of the deaf, audiologists, and speech pathologists prepare children academically and socially for a world of limitless possibilities.

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VoltaVoices-Issue2-2015-R4-FINAL.indd 1 3/30/15 10:02 PM

16 WWW. AGBELL .ORG

By Michelle E. Graham, M.S., CED, LSLS Cert. AVEdStrategies to Maximize Hearing Aid Wear

All Waking Hours:

VOLTA VOICES APR-JUN 2015 17

WHAT IS A PARENT TO DO WHEN A CHILD CONTINUALLY PULLS OUT HER/HIS HEARING AID, LOSES IT IN THE MULCH AT THE PLAYGROUND,

FEEDS IT TO THE DOG, OR WORSE YET IT’S IN A POCKET THAT JUST WENT THROUGH THE WASH? AS A RESULT OF NEARLY UNIVERSAL NEWBORN HEARING SCREENING, INFANTS WITH HEARING LOSS ARE IDENTIFIED AND FITTED WITH AMPLIFICATION WITHIN THE FIRST FEW MONTHS OF LIFE. PARENTS THAT HAVE CHOSEN LISTENING AND SPOKEN LANGUAGE AS A PRIMARY MODE OF COMMUNICATION FOR THEIR CHILD ENVISION A FUTURE WHERE THEIR CHILD REACHES THEIR POTENTIAL THRIVING BY LISTENING TO THE LANGUAGE-RICH WORLD THAT SURROUNDS THEM.

In partnership with their team of providers, including audiologists, educators of the deaf and hard of hearing, speech-language pathologists, and early interventionists, parents become their child’s first teachers of spoken language, which can only be learned through listening with hearing aids (or other hearing technology). Despite parents’ priceless dedication to researching, scheduling and keeping of appointments, caring for devices, and active participation in family sessions, device usage is a reoccurring concern for many parents. As a collaborative team using coaching strategies and applying adult learning theory, listening and spoken language professionals and parents can strive toward increased daily weartime facilitating optimal benefit for the child.

“Optimal benefit from amplification may only be achieved with consistent and appropriate hearing aid use” (Moeller, Hoover, Peterson, & Stelmachowicz, 2009; p. 14). It is recommended that children wear their devices all waking hours to access auditory information present throughout the day. The inverted recommended amount of daily hours of sleep per age group by the National Sleep Foundation (2015) are equivalent to the amount of waking hours per day that a child could be wearing their hearing devices. This gives professionals and parents an estimated amount of hours to strive towards in achieving the child’s usage of hearing devices during “all waking hours.”

THE NEED FOR CONVERSATION As outlined in the nine domains of knowledge for the Listening and Spoken Language Specialist (LSLS®) certification, it is the role of the professional to guide and empower parents as their child’s primary facilitator of language to create environments that support listening and to use hearing as a primary sensory modality by remaining consistent in device usage. Providers coaching families on their listening and spoken language journey establish elements that are critical for the success of the coaching relationship including support, collaboration, respect and trust (Hanft, Rush, & Shelden, 2004). In the September/October 2014 issue of Volta Voices, Jane Madell, Ph.D.,

and Karen Anderson, Ph.D., presented results of the Pediatric Hearing Aid Retention Project survey, which surveyed both parents and pediatric audiologists on the effectiveness and safety of hearing aid retention accessories and strategies. The results revealed that families have a significantly different view and ratings of the effectiveness of hearing aid devices and accessories.

Engagement in open and honest conversations on the challenges the parent faces is critical for ensuring consistent hearing aid usage by addressing acceptance of the hearing loss within the grieving process, device care, maintenance and usage, weartime awareness and concerns of the parents. Example questions generating a conversation in which the provider continues to guide the families include:

• DIAGNOSIS: How are you feeling about the hearing loss? What are your biggest worries? What cultural or societal pressures are you facing? How are you receiving emotional support? Would you like to connect and talk with others through parent groups or online communities?

• DEVICE CARE: What is your understanding of how the devices work? Have you had to do any troubleshooting? How do you test the batteries, listen with a stethoscope and blow out the tubing? What concerns do you have about device cost or warranty?

• DEVICE USAGE: Do you have concerns about device safety or programming? How comfortable are you with putting in the devices? How easily are you able to get them into place? What song do you sing while putting in the hearing aids? What do you do if you notice feedback?

• DEVICE WEARTIME: Why is the term “all waking hours” important? Is weartime a concern for you? How much does your child wear their device(s) throughout the day? What potential impact can you see from the amount of weartime? How can we increase weartime?

• DEVICE BENEFIT: What sounds does your child respond to without their hearing aids? What differences in listening behaviors or vocalizations do you notice when your child is wearing their devices?

By Michelle E. Graham, M.S., CED, LSLS Cert. AVEdStrategies to Maximize Hearing Aid Wear

All Waking Hours:

18 WWW. AGBELL .ORG

be ready to play!” Another solution to maximize usage of hearing aids is the use of conventional accessories available on the market designed to help with hearing aid retention. Providers working with parents can guide them through the usage of such accessories and their inclusion into the family’s daily routines. Children are evolving individuals and what works for one may not work for another, and what works today may not work tomorrow.

Adult behaviors can also have an impact on the amount of time a child wears their devices. A provider needs to work with a parent as an adult learner on developing applicable strategies to put into practice working towards an increased weartime during daily routines. The provider works to “effectively support the parents’ educational process as they attain the necessary skills to help their child each day” (Munoz, Blaiser, & Barwick, 2013; p. 13). Just as a provider coaches a family in learning strategies that facilitate listening and language throughout the day, the provider coaches the family on developing strategies to foster management of the hearing devices and consistency in device usage.

EVERY LITTLE BIT COUNTS Parents can ask themselves the question: How can I set up the situation so that my child is more successful with wearing her/his devices for longer amounts of time throughout the day? A provider coaches a parent through actively examining their daily routines and learning strategies, practicing them throughout the day, and reflecting on how they worked (Raab, Dunst, & Trivette, 2010). It is important for a parent to establish routines relating to the storage of the devices, set up expectations for themselves, and recognize that every little bit counts in terms of access to sound.

A busy parent may dismiss 20 minutes between the time a child gets out of the bath and goes to bed. However, by not wearing their hearing aids during this time they are missing out on exposure to listening opportunities and language in the bedtime routine that may include clothing and body parts vocabulary, singing of songs, and the “I love yous” exchanged with sweet kisses goodnight.

TIPS AND STRATEGIES FOR ALL WAKING HOURS Bedtime routine is just one of the many routines that parents encounter throughout the day. Strategies parents can put into place during daily routines may include the following list of examples.

• MORNING: Store hearing aids near the crib in the child’s room so that you put them in first thing in the morning allowing your child the opportunity to hear your good mornings and language associated with waking up and getting your day started, including getting dressed or changing of diapers. Children laying on a changing table are in close proximity to their parent during a diaper change and focused on the interaction. Use this opportunity to sing songs, play peek-a-boo and other engaging games.

Conversations between provider and parent that explore these areas may reveal a contributing factor to a child’s inconsistent device usage. In the same way that Stowe and Wells discussed in their “Facilitating Change through Motivational Interviewing” article in the September/October 2013 issue of Volta Voices, it is important that a listening and spoken language professional takes into account a family’s experiences, helps them to identify the problem, and empowers them to make changes.

FACTORS INFLUENCING DEVICE USAGE A variety of factors may influence a young child’s device usage and their average daily weartime. Child related behaviors accounting for inconsistent device usage can include resistance or removal of the devices either due to discomfort, illness, sleepiness, developmental cognitive milestones or play.

One solution is for professionals to coach parents to better understand stages of cognitive and play development and behavior management techniques. This will aid them in applying strategies that distract or replace one interest with something more interesting along with purposeful caregiver responses.

As a child gets older, parents are able to establish the expectation of device usage through behavior management techniques. An example of this is a scenario in which participation in preferred activities requires the wearing of devices, such as “When you’re wearing your hearing aids, you’ll

VOLTA VOICES APR-JUN 2015 19

• MEALTIME: Children are often interested in mealtime and having an expectation that they are wearing their hearing aids while at the table for snacks or meals is important. Set up the expectation ahead of time and build it into the routine of getting ready to eat. If devices are being disturbed during nursing or bottle feeding, try to reposition the baby or use the football hold in which the ears are not pressed up against the adult.

• PLAYTIME: As a child gets older and begins holding her/his head up more or sitting upright, devices may stay in place more and produce less feedback by not being up against a solid object such as the floor or a caregiver’s chest/shoulder. Establish routines in which devices are worn during all playtime activities incorporating listening to a variety of environmental and speech sounds.

• OUTINGS: If you are taking out hearing aids while riding in the car, buckle your child in the car, take out the aids and place them in their container on the floor of the backseat. After arriving, put the hearing aids back on your child before unbuckling her/him. This routine allows the child to experience the language and vocabulary associated with the anticipation of going on an outing and ensures that your child will be wearing their devices when you walk out of the car.

• DAYCARE: Getting to daycare with hearing aids on not only takes responsibility off caregivers but also demonstrates that you really are making the wearing of the hearing aids a priority. Providers can visit with caregivers to inform and answer questions in regards to the child’s hearing loss, device care and usage. Caregivers should establish routines that encourage weartime throughout the day while the parents are not present.

• BATHTIME: Take the hearing aids out just before placing your child in the water so that they are able to listen to the tub fill and hear language associated with the gathering of bath toys, getting undressed, and playing games while looking in the mirror. Store the hearing aids out of reach of the water, but accessible, so that you are able to put them back in right after getting your child out of the water. Talking to your child about why you take out her/his hearing aids before getting into the water helps build a child’s understanding of usage and a sense of responsibility for her/his devices.

Even though your child may not be able to wear their devices during water play activities, parents should establish a routine for removal just before entering the water and reinsertion as the child ends the activity. Dry off the child’s hair and head first, put in the hearing aids, then dry off the rest of the body. The child may have missed information while they were not able to wear their device but afterwards they’ll be able to listen to conversations recalling the fun times and laughter. If a child takes a break from playing in the water and sits on a towel watching the action, put their hearing aids back in. This way

they’ll be able to listen to the water splashing, children’s laughter, lifeguard’s whistle and parents’ narrative language and self-talk in reference to all the activities going on around them.

The usage of devices all waking hours is a team effort and consistency amongst caregivers will benefit the child. Through a collaborative learning process, "daily hearing aid management [becomes] a fundamental component of effective intervention" (Munoz, Preston, & Hicken 2014; p. 380) and parents feel empowered to make changes that benefit their child’s listening and spoken language development. Families and professionals alike want children to reach their potential and working as a team applying adult learner theory through coaching and the establishing of routines can help make that happen!

REFERENCES AG Bell Academy for Listening and Spoken Language (2015). Principles of LSLS.

Available at http://www.agbell.orgMadell, J., & Anderson, K. (2014). Hearing aid retention for infants and young children.

Volta Voices, 21(5), 22-25. Hanft, B., Rush, D., & Shelden, M. (2004). Coaching families and colleagues in early

childhood. Baltimore, MD: Paul H. Brookes Publishing Company. Moeller, M. P., Hoover, B., Peterson, B., & Stelmachowicz, P. (2009). Consistency

of hearing aid use in infants with early identified hearing loss. American Journal of Audiology, 18(1), 14-23.

Munoz, K., Blaiser, K., & Barwick, K. (2013). Parent hearing aid experiences in the United States. Journal of the American Academy of Audiology, 24(1), 5-16.

Munoz, K., Preston, E., & Hicken, S. (2014). Pediatric hearing aid use: How can audiologists support parents to increase consistency? Journal of the American Academy of Audiology, 25(4), 380-387.

National Sleep Foundation (2015). Expert panel recommends new sleep durations. Available at http://www.prnewswire.com/news-releases/expert-panel-recommends-new-sleep-durations-300028815.html

Raab, M., Dunst, C. J., & Trivette, C. M. (2010). Adult learning process for promoting caregiver adoption of everyday child language learning practices: Revised and updated. Practically Speaking, 1(2), 1-8.

Stowe, D. L., & Wells, S. P. (2013). Facilitating change through motivational interviewing. Volta Voices, 20(5), 32-35.

Y ou should certainly do your own research and talk to your child’s audiologist for additional information. The purpose of this primer is to get you on solid ground with

the important information, terms and many acronyms that you need to know if you want to have a productive and substantive conversation about hearing loss. In the online version of this article (see end for more

Whether you are a parent, relative, friend

or teacher of a child or student who has a

hearing loss, it is essential to be comfortable

and knowledgeable about his or her hearing

loss. The first step that will get you there is

understanding hearing testing, the audiogram

(the graph that represents the hearing

testing results) and some of the other special

tests that audiologists often complete.

By Donald M. Goldberg, Ph.D., CCC-SLP/A, FAAA, LSLS Cert. AVT

audiogram

thresholds

frequencies

hertz

decibels

dB HL

external auditory meatus

air conduction

bone conduction

cochlea

within normal limits

pure tone average

degree

conductive

sensorineural

mixed hearing loss

cerumen

eighth cranial nerve

auditory/vestibular nerve

speech audiometry

KEY TERMS

A Guide forParents and Teachers

Hearing Testing:

20 WWW. AGBELL .ORG

Figure 1. Sample audiogram. Also, check out the Speech Banana on the AG Bell Listening and Spoken Language Knowledge Center at www.agbell.org/SpeechBanana. credit: bluetree publishing

information), you will find a Glossary of Terms— a handy navigator for this “acronym soup” of terms and concepts. Also, check out the glossary of terms on the AG Bell Listening and Spoken Language Knowledge Center for an easy alphabetical search of terms, concepts and definitions related to hearing loss at www.agbell.org/Glossary. The AudiogramAn audiogram is a graphic representation of a person’s hearing or auditory responses, specifically thresholds, which are defined as the “softest” sound detected 50 percent of the time. Thresholds need to be repeatable, before they are recorded on the audiogram.

Across the horizontal plane (abscissa or x-axis) of the audiogram are frequencies in Hertz (Hz), formerly referred to as cycles per second. Frequency information reflects the physical stimuli of sound vibrations, with the psychological correlate of “pitch.” A person with typical hearing can usually hear sounds between 20 and 20000 Hz. During hearing testing, however, only the octave frequencies are typically measured and are considered “frequency-specific” samples (i.e., 250, 500, 1000, 2000, 4000 and 8000 Hz). On the vertical plane (ordinate or y-axis) of the audiogram are labels of “loudness” measured in decibels (dB, the upper case B is a convention which honors Dr. Alexander Graham Bell). On the audiogram, the dB referent is to dB HL

(Hearing Level; whereas the physical measure is dB Sound Pressure Level or dB SPL) (see Figure 1). The Hearing Testing ProcessNow that you are oriented to the audiogram’s basic form, let’s begin talking about the typical hearing testing process. Most evaluations begin with the taking of a case history, including probes of the mother’s health during pregnancy, the actual delivery, medical and family history, along with inquiries to learn more about the child’s development (fine and gross motor skills, speech sound productions, receptive and expressive language, early literacy status, among other areas).

There are a host of electrophysiological tests of hearing such as otoacoustic emissions or OAEs, automated and diagnostic auditory brainstem response (ABR) testing, and auditory steady state response (ASSR), but these measures are beyond the scope of this article. However, if behavioral testing doesn’t quickly lead to ear-specific data being determined (that is, right ear only and left ear only measurements) and/or if questions about the tests’ reliability (repeatability) or validity (did the test accurately measure what it was supposed to measure) remain, a prompt referral and follow-up with a pediatric audiologist and a facility with significant experience completing auditory electrophysiological measures, such as the ones mentioned above, is in order.

The behavioral measures referred to above might include Behavioral Observation Audiometry (BOA), Visual Reinforcement Audiometry (VRA) or Conditioned Play Audiometry (CPA), depending on the age and developmental status of the child. The testing method(s) used should be coordinated and completed by experienced pediatric clinicians.

When testing is completed with ear inserts placed in the child’s ear canal (external auditory meatus) or if headphones are used, the measurement is called air conduction (AC) testing. The complete pathway for air conduction includes the “whole system” (i.e., the outer, middle and inner ear, and beyond to the brain). The thresholds obtained with AC testing are placed on the audiogram as red circles for the right ear and blue “X”’s or crosses for the left ear. In the actual behavioral testing, the audiologist will have selected a frequency (the first frequency often tested is 1000 Hz), and by using an up and down “bracketing” procedure of “louder” and “softer” pure tone or sine wave presentations, a 50 percent criterion of the “softest” sound level needs to be obtained. That level (in dB HL) is plotted on the vertical line (x-axis) on the audiogram, in this case under 1000 Hz, and at the intersection with the horizontal line (y-axis) point for the X dB HL number established. Testing is completed at other frequencies for each ear separately, and a complete AC audiogram is subsequently filled in.

VOLTA VOICES APR-JUN 2015 21

250 1000 2000 4000 500 8000

0

90

10

20

30

40

50

60

70

80

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Bone conduction (BC) testing makes use of a bone vibrator or oscillator that is placed on the “temple” bone area of a patient, behind and to the side of the ear. Testing via bone conduction essentially bypasses the outer and middle ear, and literally vibrates the bones of the skull and directly measures responses from the cochlea, which is the sense organ of hearing located within the inner ear. Thresholds from the bone conduction measures are similarly placed on the audiogram as red (<) or blue (>) brackets (these are placed directly to the left and right sides, respectively, of the vertical line reflecting the frequencies tested—typically only 250, 500, 1000, 2000 and 4000 Hz are measured by BC).

Using Figure 2 to clarify, for 250 Hz the AC threshold for the right ear is 0 dB HL, as noted by the red circle, and the AC threshold for the left ear is 5 dB HL for the left ear, as indicated by the blue cross. You will also see that for 250 Hz, the BC threshold for the right ear is at 0 dB HL (red <) and the BC threshold for the left ear is at 5 dB HL (blue >).

As the audiologist evaluates the threshold results, specific guidelines are used to interpret the “degree” or “level” of hearing or hearing loss. Threshold responses for a child that are at 15 dB HL or “better” (e.g., 10, 5, 0, or even -5 dB HL) are all considered to be Within Normal Limits (WNL). In other words, thresholds at the top of the audiogram reflect “good” hearing. As the thresholds need to be plotted further down the dB HL (higher or larger numbers), this indicates a more significant degree of hearing loss.

Some professionals characterize hearing loss based on each individual threshold; others rely on the number average for each ear at 500, 1000 and 2000 Hz called the Pure Tone Average (PTA); whereas still others methodically characterize the whole audiogram, taking into consideration that rarely are the thresholds completely “flat” across the audiogram, and are often more likely at “better” levels in the low frequencies (pitches) and sloping downward in the mid frequencies, with the “worst” threshold data often in the high frequencies (which helps explain why many individuals have the most difficult time hearing “weak” sounds with most of their acoustic energy in the high frequency regions such as the “f,” “s,” and “th” sounds). Degrees and Types of Hearing LossThe severity of a hearing loss is typically determined by evaluating the dB level and using various terms to decode the degree of the hearing loss. Depending upon the choice(s) noted above of describing individual thresholds, the PTA numbers or the severity details across the whole audiogram, most texts use the following characteristic terms to indicate degree of hearing loss: dB HL numbers of 26-30 as a “slight” hearing loss; 31-40 as “mild”; 41-55 as “moderate”; 56-70 as “moderately severe”; numbers between 71 and 90 suggesting a “severe” loss; and thresholds of 91 dB HL and above are indicative of a “profound” hearing loss. Most audiologists avoid language that uses terms suggesting a "percent hearing loss" for a variety of reasons. Notably, hearing is not a 0 percent or a 100 percent issue. In addition, because we use measures that can reach 120 or 130 dB—and the audiogram scale is logarithmic—the transfer of, for example, a 75 dB HL hearing loss cannot be interpreted as a 75 percent hearing loss.

It should also be noted that there are three primary types of hearing loss, which are based on the three classifications of conductive, sensorineural (also referred to as sensory/neural or sensori-neural), and mixed hearing loss. By definition, a conductive hearing loss involves a problem(s) with the “conduction” of sound to the cochlea. In conductive hearing loss, the site of lesion (or the anatomical location of the problem) is in the outer and/or middle ear. An example might be a combination of wax or cerumen in the ear canal (part of the outer ear) at the same time a child is experiencing a build-up of middle ear fluid. Fortunately many conductive hearing losses can be managed medically and can be reversed, corrected or improved.

A sensorineural hearing loss involves the cochlea and/or the auditory nerve (the eighth cranial nerve or the auditory/vestibular nerve). Although many people, especially the older adult, are incorrectly told they have “nerve damage” or “nerve deafness,” few hearing losses

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Figure 2. credit: donald goldberg

actually involve the auditory nerve. This fact becomes especially important as we review patients for cochlear implant candidacy. If there was an absent nerve or a damaged nerve, a cochlear implant would be intuitively contraindicated. As most of our patients have damage to the cochlea, the cochlear implant actually “replaces” the function of the cochlea for these patients and they can become cochlear implant recipients. Sensorineural hearing losses, which are typically permanent and nonreversible, result from heredity, birth disorders, assorted diseases and disorders (e.g., meningitis), damage to the hair cells of the cochlea from medications (referred to as “ototoxic”), noise exposure, or the aging process. Finally, a mixed hearing hearing loss represents a combination of a conductive and sensorineural hearing loss.

In the July-September issue of Volta Voices, Part 2 of this article will discuss additional testing in the category of speech audiometry. In the

meantime, please see AG Bell’s Recommended Protocol for Audiological Assessment, Hearing Aid and Cochlear Implant Evaluation, and Follow-up at www.agbell.org/Protocol.Audiological.Assessment/, which provides a “gold standard” of testing for children and other patients. See you in September!

To access this article online as well as other helpful resources, including a Glossary of Terms, visit www.agbell.org/VoltaVoices/Apr-Jun2015/HearingTestingGuide

VOLTA VOICES APR-JUN 2015 23

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EHDI-PALS: Linking Families to Services

The Joint Committee on Infant Hearing (JCIH) recommends that infants with hearing loss be identified through universal newborn hearing screening (UNHS) by 1 month of age, diagnosed by 3 months of age, and that appropriate intervention services be initiated by 6 months of age (JCIH, 2007). Research demonstrates that meeting these benchmarks—known as 1-3-6— greatly improves speech, language and communication outcomes for children who are deaf and hard of hearing (Yoshinaga-Itano & Apuzzo, 1998; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998).

By Anne Oyler, Au.D., CCC-A

VOLTA VOICES APR-JUN 2015 25

Universal Newborn Hearing Screening: How Far We’ve ComeEach year in the United States, state-based Early Hearing Detection and Intervention (EHDI) programs report newborn hearing screening data to the Centers for Disease Control and Prevention (CDC). In 2010, almost 98 percent of babies born in the United States and its territories were screened for hearing loss. This is a dramatic increase from the 46 percent of babies screened in 1999.

Unfortunately, tracking the follow-up of these infants from screening through diagnosis and into intervention has been problematic. In 2010, 39.4 percent of the babies referred from UNHS were unaccounted for either because of attrition or poor tracking and documentation. While this represents an improvement over the 64 percent calculated in 2005, continued attention is needed to ensure that babies identified through newborn hearing screening receive recommended diagnostic and intervention services as quickly as possible (CDC, 2012).

Loss to Follow-up: Still a Long Way offIn 2008, the American Speech-Language-Hearing Association (ASHA) published a document titled Loss to Follow-Up in Early

Hearing Detection and Intervention. This technical report provided results of a systematic review of research in the area of loss to follow-up (LTF) (ASHA, 2008).

The systematic review highlighted some potential reasons for delayed follow-up after UNHS:• Lack of parent education about hearing screening

and hearing loss• Barriers to information-sharing between screening

programs, health care providers and families • Funding issues for EHDI programs • Poor reimbursement for audiology services • Lack of/or reduced coverage for hearing aids,

ear molds and cochlear implants • Education, literacy level, socioeconomic status

and age of the mother• Proximity to resources—long travel time to

obtain services• Identifying professionals with expertise in

pediatric audiology and intervention

To meet the JCIH goals of early and timely diagnosis and management of hearing loss, reduce LTF, and minimize communicative delays, families need to be connected to appropriate audiology and intervention services early and stay connected throughout transition periods leading up to school (ASHA, 2013). One issue leading to LTF is difficulty in identifying pediatric audiology facilities with the clinical expertise and equipment to meet the specific needs of infants and young children. This challenge creates delays in the diagnostic and intervention process, thus negatively affecting child outcomes.

In 2009, a task force composed of stakeholders, including pediatric audiologists representing the American Academy of Audiology (AAA), ASHA, CDC, Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA), Early Childhood Technical Assistance (ECTA) Center, Hands & Voices, Health Resources and Services Administration (HRSA), JCIH, National Center for Hearing Assessment and Management (NCHAM), and State Early Hearing Detection and Intervention (EHDI) Coordinators began meeting to develop the Early Hearing Detection and Intervention–Pediatric Audiology Links to Services (EHDI–PALS) website (EHDI-PALS, n.d.).

EHDI-PALS: Bridging the Gap EHDI-PALS houses a pediatric facility directory and helpful family-friendly educational resources that were developed with input from parents of children with hearing loss. The directory is populated with audiology facilities that employ licensed audiologists and offer diagnostic, hearing aid and cochlear implant services for children under age 5.

A detailed survey that includes questions about audiology (hearing) services, languages available, payment options, appointment availability, and related onsite services is completed by each facility. EHDI–PALS employs a sophisticated algorithm (decision tree) that analyzes survey responses and then lists only those facilities that can provide specialized, age-appropriate services consistent with current best practice standards.

Parents are required to input their child’s date of birth, desired services (e.g., hearing test, hearing aids, cochlear implant) and zip code in order to receive a list of the audiology facilities in their geographic location that best meet their needs. The site allows a comparison of three facilities at a time in an easy-to-read table. Directions to facilities are provided in Google Maps.

EHDI-PALS is partnering with parent groups, physicians and EHDI coordinators to spread the word about the availability of its directory and resources. Since November 2012 the EHDI-PALS website has been viewed almost 75,000 times. Facility searches were conducted almost 4,000 times.

Questions to AskIn addition to a number of well-vetted educational websites and organizations, EHDI–PALS features a resource called “Questions To Ask.” This resource includes questions to ask and the rationale for asking them, along with more in-depth “Learn More” information if the parent is interested. The main topic areas include the following questions to ask when:• Scheduling an appointment for your child’s hearing test• Your child has been tested and has hearing loss• You need more support• Scheduling a hearing aid appointment• You are at the hearing aid appointment• You are thinking about a cochlear implant for your child• Intervention is needed and you are making decisions

about communicating with your child

" To meet the JCIH goals of early and timely diagnosis and management of hearing loss, reduce LTF, and minimize communicative delays, families need to be connected to appropriate audiology and intervention services early and stay connected throughout transition periods leading up to school (ASHA, 2013)."

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Successful outcomes for children with hearing loss can only be achieved if babies are diagnosed with hearing loss and linked to appropriate early intervention services in a timely manner. The EHDI–PALS directory is a comprehensive, user-friendly online tool designed to help guide and educate families and professionals searching for needed pediatric audiology services. To date over 850 facilities across the country and U.S. territories have enrolled.

EHDI–PALS has great potential for not only educating families about what to expect and ask as they access audiology services, but also for helping them identify appropriate audiology facilities, which will lead to timelier access to services and improved outcomes for their children with hearing loss.

REFERENCESAmerican Speech-Language-Hearing Association (2008). Loss to follow-up in early

hearing detection and intervention [Technical report]. Retrieved from www.asha.org/policy/TR2008-00302.htm

American Speech-Language-Hearing Association (2013). Supplement to the JCIH 2007 position statement: principles and guidelines for early intervention following confirmation that a child is deaf or hard of hearing [Position statement]. Retrieved from www.asha.org/policy/PS2013-00339

Centers for Disease Control and Prevention (2012). Identifying babies with hearing loss. Retrieved from www.cdc.gov/features/dsinfanthearingloss/index.html

Early Hearing Detection and Intervention–Pediatric Audiology Links to Services (n.d.). Retrieved from http://ehdipals.org/Default.aspx

Joint Committee on Infant Hearing (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention [Position statement]. Retrieved from www.asha.org/policy/PS2007-00281

Yoshinaga-Itano, C., & Apuzzo, M. L. (1998). Identification of hearing loss after 18 months of age is not early enough. American Annals of the Deaf, 143(5), 380–387.

Yoshinaga-Itano, C., Sedey, A. L., Coulter, B. A., & Mehl, A. L. (1998). Language of early and later-identified children with hearing loss. Pediatrics, 102(5), 1168–1171.

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HEAR OUR VOICES

Midlife Awakening: How My Wife and I Became Bilateral Cochlear Implant Recipients BY JOHN OJEDA

My wife and I both received bilateral cochlear implants in the second half of 2014. The journey has been incredible thus far and we feel it was the best decision and investment we have made to attain better access to sound and improve our quality of life. I am eternally grateful to have met Ted Meyer, M.D., Ph.D., and his superb team at the Cochlear Implant Program of Medical University of South Carolina in Charleston.

I was raised in the mainstream using listening and spoken language, but that still didn’t stop me from having prejudices and misconceptions about cochlear implants. While attending Gallaudet University, I even wrote a paper on how doctors and hearing health professionals such as audiologists and speech therapists were coercing parents into implanting their children who were deaf so that they could become “hearing” again. At the time, I felt that cochlear implants were a slap in the face for people who are deaf and hard of hearing like me, who had worked hard all of their lives to achieve all of the goals they had set forth for themselves as people with hearing loss.

Fast forward 20 years later, my lovely wife and I are the parents of two children with typical hearing. Being parents changed our perspective on cochlear implants. For starters, we now understand what parents of children who are deaf and hard of hearing are trying to attain for them when choosing cochlear implantation. We understood that parents are trying to give their child a good start and a better quality of life, which is no different than what we want for our own children who can hear.

We faced challenges as people who are deaf and found ourselves feeling

isolated. In South Carolina, where we live, there aren’t many people who are deaf and hard of hearing and use listening and spoken language. We began to struggle with our social life and shied away from participating in our children's extracurricular or school activities because we couldn’t hear. I was struggling at work and found it an uphill challenge, despite the assistive devices and accommodations for my hearing loss. We felt that our quality of life was deteriorating quickly.

About six years ago, my wife was in dire need of repairing her ruptured ear drum. All the ENTs that we visited in Charleston gave us a grim prognosis with only a 50 percent chance of success. When we visited Dr. Meyer at Medical University of South Carolina, he expressed confidence and gave us a good prognosis. My wife’s surgery was a glowing success! During our follow-up visits, Dr. Meyer talked to us about getting a cochlear implant. He wasn’t pushy about it and we initially responded that we’d think about it.

Although we gave it some thought,

we shelved the idea because we were wary of the potential side effects without the guarantee that it would work. However, we began to see our friends with hearing loss become successful cochlear implant users. I envied their abilities, as I was no longer able to use the phone and relied heavily on speechreading to understand everyone, including my own children. We began to research cochlear implants in earnest.

I became a member of Facebook and started reaching out to people who had received cochlear implants. Their stories were inspiring, remarkable and, in some

John Ojeda with his wife at a friend's house in Centennial, Colorado. credit: patrick kay

Roman and Isabelle, the author's children, smiling after a successful dance recital event for Isabelle. credit: john ojeda

VOLTA VOICES APR-JUN 2015 29

instances, simply mind-blowing! We could no longer wait.

My wife took the bold step of receiving her cochlear implants first because, as a homemaker, she didn’t need to schedule time off. There were many unanswered questions: How much time off would I need for a journey of this magnitude? It is difficult to predict because everyone is different. What results could my wife and I expect? This is the ultimate unknown because the results depend greatly on an individual’s prior hearing history and auditory memory.

My wife and I have similar hearing losses, but we are different in that I was born with typical hearing and she was not. If she has some measurable success with the cochlear implant, then perhaps I could expect the same. My wife underwent surgery twice to become a bilateral cochlear implant recipient within three months. As I watched and waited, I was incredibly nervous and filled with lingering skepticism about her potential success, despite all of the research we had done and all of the success stories we heard.

Both of her cochlear implant activations required patience and perseverance. But gradually I saw the changes. Her love for music went from non-existent with hearing aids to becoming a music enthusiast. Her music appreciation just skyrocketed completely off the charts. The hearing tests for both processors during her activations blew my mind. I sat in the sound booth alongside her, and she raised her hand at hearing beeps and sounds that I couldn’t perceive.

I was astounded. I knew then that I would move forward with my own surgery and that I would hear better with the cochlear implant than I could with a hearing aid. Our first moments with her cochlear implants were amazing and unforgettable.

The day after my 48th birthday, I underwent surgery for my first implant. I decided to blog about my experience to help people on the same journey by providing information and honest reflections of my experiences. It was therapeutic for me to blog about my cochlear implant experience—it offered me a distraction and nothing could have prepared me for what I was to experience.

My first activation was phenomenal from day one! I was truly in awe, as I did not expect good results this quickly, and every day it gets better. My second activation was even better than the first one, since my brain already had some training and sound recognition, and the acclimation process was quicker the second time around. Going from unilateral to bilateral helped me localize sounds better. It filled the “void” of not hearing from one side and I went from listening in mono to listening in stereo. The benefits of becoming a bilateral cochlear implant user

have proven to be well worth my time, effort and investment. Being able to hear with both implants has been a real game changer for me. After 20 years of not using the phone, I am now an avid phone user!

This is my story so far and I have yet to experience many things with the cochlear implants. I look forward to new opportunities at work that would enable me to collaborate with other teams as the result of my newfound hearing, participating at my children's school, mingling with other parents and friends, and possibly setting up a social group for cochlear implant recipients in the Charleston area.

I am a member of the Cochlear Implant Experiences (CIE) group on Facebook, which is dedicated to informing and educating prospective cochlear implant recipients during their own personal journey. I continue to blog about my experience at ci4hearing.wordpress.com and participate on the CIE forum via Facebook.

The possibilities are endless, the sky is the limit, and my bucket list has grown immeasurably. All because of this wonderful hearing technology called cochlear implants.

The author's son Roman after his first tournament win for 11u travel baseball in South Carolina. credit: john ojeda

The author's son, Roman, playing his alto saxophone at his grandparents' house in New York City in 2014. Roman has been accepted to Charleston's School of the Arts and starts in the fall of 2015. credit: john ojeda

John Ojeda with his daughter Isabelle after her dance recital in May 2013. credit: john ojeda

Author's daughter Isabelle strikes a pose at her dance recital in May 2013. credit: john ojeda

FOCUS ON CHAPTERS

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Mass AG BellBY EVAN BRUNELL

Mass AG BellEmail: massagbell@gmail.comWebsite: massagbell.org

Navigating a child’s journey through hearing loss is a daunting task for parents, who have to work with a variety of hearing and education professionals to ensure proper diagnosis, optimal access to sound through hearing technology, and access to sufficient education and services for language development, literacy and learning.

Just as important is the need to successfully socialize children and teenagers who are deaf and hard of hearing. Everyone, regardless of hearing status, has an inherent need to belong and connect.

At the 2013 AG Bell Listening and Spoken Language Symposium, AuditoryVerbal in the United Kingdom reported findings that showed children with hearing loss work with less information than their peers with typical hearing during play and other informal activities. This is significant because 90 percent of what typical young children learn is through overhearing (Cole & Flexer, 2011). Regardless of how well a child who is deaf or hard of hearing can succeed at honing their listening skills, they will always have challenges in being able to successfully overhear others. AuditoryVerbal found that during a typical

“successful” play session, 80 percent of

children with hearing loss experienced a breakdown in communication.

With these factors coming into play for a child with hearing loss, most of his or her language is learned from adults, not other children, and ideas are discussed concretely instead of abstractly among peers, AuditoryVerbal notes. Children who are deaf and hard of hearing miss out on learning informally how to comfort, negotiate, advocate and participate, which can affect emotional growth and have an impact on confidence and self-esteem.

Children and teenagers can also have difficulty making friends with peers with typical hearing due to public perception of hearing loss and uncertainty from peers on how to communicate. Research shows that 77 percent of children and teenagers with typical hearing do not know how to communicate with someone with hearing loss, and over a quarter (27 percent) would not even try to talk to a peer who is deaf or hard of hearing (UK’s National Deaf Children’s Society, 2002).

As children enter the teen years, they struggle with feeling “normal” regardless of hearing status. Those with hearing loss are even more at a disadvantage, so imagine how powerful the feeling of normalcy must be to a child or teenager with hearing loss to connect with a peer, bonding over shared experiences and frustrations.

The Massachusetts chapter of AG Bell (Mass AG Bell) understands the

importance of fostering social connections between children and teenagers who are deaf and hard of hearing, and shapes its chapter activities around social events. Mass AG Bell typically holds six to eight events per year, also volunteering time and resources to the Clarke Schools for Hearing and Speech as well as the biennial Northeast Cochlear Implant Convention held in the state.

A teen participant at the Clarke Schools’ Explore the Outdoors camp found the social connections particularly helpful.

“I learned I’m not the only person who says ‘what?’ multiple times when talking to people,” she said. “I didn’t feel awkward when I took my hearing aid off at the beach or when I was not hearing most of what people were saying.”

The chapter’s success goes beyond connecting peers with hearing loss to one another. Reverberations can be felt throughout the entire family, when family members connect with one another. Lori Glassman, a Mass AG Bell board member and parent of a child with hearing loss, said that her family participated in chapter events so that the whole family would be exposed to adults, teens, younger children and babies with hearing loss.

“Even Corey, a sibling with typical hearing, needed to know he’s not the only one with a brother who is deaf. He needed to

Ellie P., Elaine M. and Katie P. at Mass AG Bell's 2014 fall mini-golf event in Auburn, Massachusetts. credit: bonnie baker photography

Teens Jamie S., Ted H., Jeremy G., Jeremy W., Olivia H. and Kim D. enjoy Mass AG Bell's 2014 fall mini-golf event in Auburn, Massachusetts. credit: kasey kodack

VOLTA VOICES APR-JUN 2015 31

share stories about being patient and his brother’s awesome speechreading skills.”

In order for parents to be notified of social events that may interest them, Mass AG Bell sends out regular emails and maintains a public calendar of events occurring throughout the state, regardless of whether Mass AG Bell is involved. The chapter sends out quarterly newsletters, and its website (massagbell.org) holds additional information and resources, including a blog.

Events vary between recurring and one-time events. There is an annual Winter Skate Party in which parents and children enjoy skating on a hockey rink and networking with each other. Despite a snowstorm threatening the event in February, Mass AG Bell saw record turnout. In addition, a mini-golf event is held every September to encourage children to keep in touch as the new school year begins, since many of them are typically the only student in their school with hearing loss. Other events held in recent years include sailing lessons, college or minor-league sport games, canoeing and hiking.

Previously, events used to be targeted specifically to children or teenagers, with some chapter-wide events. Recently, the chapter has had success with events for children of all ages so that younger children can meet older children who serve as implicit role models. The presence of positive role models is also apparent in the composition of Mass AG Bell’s board. Of a nine-person board, five directors have hearing loss. Children and parents gain the ability to see a successful adult with hearing loss who can share experiences and advice at different stages of living with hearing loss.

As president of Mass AG Bell, member of the Clarke Schools board of trustees and the AG Bell board of directors, volunteer, and an adult with profound hearing loss, I understand the importance of social connections among peers. Throughout my work, I’ve attempted to foster and maintain friendships with teenagers who are deaf and hard of hearing in order to serve as a resource as they navigate academic and social challenges.

Despite advances in technology, which have given today’s children who are deaf

and hard of hearing the ability to integrate into mainstream society more efficiently than previous generations, I still see a desire among these children, teenagers and young adults for social connections with peers and adults who are deaf and hard of hearing. My opinions are generally solicited in matters of self-advocacy and for problem-solving situations in which there may be unique challenges related to hearing loss.

Recently, I was honored with the Outstanding Advocate of the Year Award by the Massachusetts Commission for the Deaf and Hard of Hearing in recognition of my leadership, service and accomplishments as an advocate for individuals with hearing loss, particularly by fostering social connections for children and youth with hearing loss, mentoring through Clarke Schools, and building a strong and thriving state chapter.

Events held by Mass AG Bell not only benefit the children, they help parents see successful teenagers and adults with hearing loss, giving them hope and a roadmap to success. Mass AG Bell events also serve to connect parents of children with hearing loss in a natural way to share experiences and solicit advice. It is important for parents to have a support network of others who “get it.” Mass AG Bell board members who are deaf and hard of hearing also regularly provide advice to parents, affording them a unique view provided by someone who has had similar experiences as their children. Mass AG Bell intends to expand its offerings next year to further empower parents, as it will begin offering AG Bell’s parent advocacy training courses.

“There is an inexplicable comfort sharing your experiences with other families who are in the same situation.” Glassman adds.

“It’s nice to get advice from experienced parents and even more rewarding is to give advice to new families.”

The confidence children with hearing loss can gain through our chapter’s work connecting peers together can reap lifelong rewards. “Confidence is so vital to their academic success. When students see that they are not alone, confidence grows,” says Kaitlyn Millen, a teacher of the deaf who oversaw Mass AG Bell’s teens program from 2013-2015. “This is exactly why organizations that develop the community of families of students who are deaf and hard of hearing, like the Massachusetts chapter of AG Bell, are a necessary part of the changing landscape of deaf education.”

Children who are deaf and hard of hearing and their parents face challenges on a daily basis in charting a path through life. Mass AG Bell is dedicated to helping children and parents connect with one another, share information, and increase confidence. By doing so, the chapter helps AG Bell further its vision outlined in its strategic plan where families receive support throughout a child's life transitions, and children receive peer support and learn to be self-advocates.

REFERENCESCole, E., & Flexer, C. (2011). Children with hearing loss:

Developing listening and talking birth to six, Second Edition. San Diego, CA: Plural Publishing.

National Deaf Children's Society (2012). Teenagers admit they don’t know how to talk to a deaf person. Available at http://www.ndcs.org.uk/for_the_media/press_releases/press_release_archive_2012/teenagers_admit_they.html

Whitney Meyer (third from left), a professional ice-skater who is deaf, poses with Mass AG Bell skaters at its 2013 winter skate in Cambridge, Massachusetts. credit: kasey kodack

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LET’S KEEP THE CONVERSATION GOING:

IEP MEETING DO'S AND DON'TS As parents talk with more professionals about communication options for their children they need to approach working with professionals in a collaborative manner. http://bit.ly/1zCkuOM

FROM UNCERTAINTY TO INSPIRATION Although a child had to overcome many challenges when he was born he was able to enter a mainstream kindergarten and be successful. http://bit.ly/1E1Yn9S

PEDIATRIC AUDIOLOGISTS Pediatric audiologists are one of the essential professionals families will collaborate with in order to help their child hear and talk. http://bit.ly/17fEJJB

Online Resources for Parents of Children Newly Diagnosed with Hearing Loss

INSURANCE GUIDE FOR PARENTSAs parents move through the emotions that diagnosis brings the next feeling might be one of panic: "How will I pay for treatment?" This guide to insurance and hearing loss will make navigating a course to listening and spoken language a little easier for your child. http://bit.ly/WLzpTK

FROM ONE PARENT TO ANOTHER: AN OPEN LETTER TO PARENTSAlex DeMolina tells the story of how she helped her child hear and talk. She suggests that other parents learn the acronyms of the government agencies, know about the speech banana, and surround themselves with others who support the decisions of their children’s communication. http://www.agbell.org/OpenLetterfromParenttoParent/

NAVIGATING THE EMOTIONAL IMPACT OF DIAGNOSISA diagnosis of hearing loss may trigger deep and complex emotions in parents. Many models of grief that reflect how parents feel may not include discussion of grief’s cyclical nature. Learn how families may respond to a more intuitive and less restrictive model. http://www.agbell.org/NavigatingtheEmotionalImpactofDiagnosis/

DIRECTORY OF SERVICES

34 WWW. AGBELL .ORG

Directory of ServicesThe Alexander Graham Bell Association for the Deaf and Hard of Hearing is not responsible for verifying the credentials of the service providers below.

Listings do not constitute endorsements of establishments or individuals, nor do they guarantee quality.

CaliforniaEcho Center/Echo Horizon School, 3430 McManus Avenue, Culver City, CA 90232 • 310-838-2442 (voice) • 310-838-0479 (fax) • 310-202-7201 (tty) • vishida@echohorizon.org (email) • www. echohorizon.org (website) • Vicki Ishida, Echo Center Director. Private elementary school incorporating an auditory/ oral mainstream program for students who are deaf or hard of hearing. Daily support provided by credentialed DHH teachers in speech, language, auditory skills and academic follow-up.

HEAR Center, 301 East Del Mar Blvd., Pasadena, CA 91101 • 626-796-2016 (voice) • 626-796-2320 (fax) • info@hearcenter.org (e-mail) • www.hearcenter.org (website) • Ellen S. Simon, Executive Director · Nonprofit 501c3 since 1954. Provides high quality Speech, Hearing, and Hearing Aid Services. Licensed Audiologists conduct hearing evaluations and dispense HEARING AIDS for all

ages (newborns-seniors) with state of the art equipment. Licensed Speech Language Pathologists conduct speech evaluations and therapy for ages 6 months -18 years. HEAR Center also provides free outreach services such as free hearing and speech screenings, health fairs, and educational sessions.

HEAR to Talk, 547 North June Street, Los Angeles, CA 90004 • 323-464-3040 (voice) • Sylvia@hear2talk.com (e-mail) • www.hear2talk.com • Sylvia Rotfleisch, M.Sc.A., CED, CCC, Certified Auditory-Verbal Therapist®, LSLS Cert. AVT, Licensed Audiologist, California NPA Certified. Trained by Dr. Ling. Extensive expertise with cochlear implants and hearing aids.

Jean Weingarten Peninsula Oral School for the Deaf, 3518 Jefferson Ave. Redwood City, Ca. 94062 • jwposd@jwposd.org (email) • www.deafkidstalk.org (website) • Kathleen Daniel

Sussman–Executive Director–Pamela Hefner Musladin–Director of School A listening and spoken language program where deaf and hard of hearing children listen, think and talk! Cognitive based program from birth through Kindergarten. Students develop excellent language, listening and social skills with superior academic competencies. Services include educational programs, parent/infant, speech/language/auditory therapy, mainstream support, educational/clinical audiology, occupational therapy and Tele-therapy.

John Tracy Clinic, 806 West Adams Boulevard, Los Angeles, CA 90007 • 213-748-5481 (voice) • 800-522-4582 · PALS@JTC.org • www.jtc.org & www.youtube.com/johntracyclinic. Early detection, school readiness and parent empowerment since 1942. Worldwide Parent Distance Education and onsite comprehensive

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audiological, counseling and educational services for families with children ages birth-5 years old. Intensive Summer Sessions (children ages 2-5 and parents), with sibling program. Online and on-campus options for an accredited Master’s and Credential in Deaf Education.

Listen and Learn, 4340 Stevens Creek Blvd., Suite 107, San Jose, CA 95129 • 408-345-4949 • Marsha A. Haines, M.A., CED, Cert. AVT, and Sandra Hamaguchi Hocker, M.A., CED • Auditory-verbal therapy for the child and family from infancy. Services also include aural habilitation for older students and adults with cochlear implants. Extensive experience and expertise with cochlear implants, single and bilateral. Mainstream support services, school consultation and assessment for children in their neighborhood school. California NPA certified.

No Limits Speech and Language Educational Center and Theatre Program, 9801 Washington Blvd., 2nd Floor, Culver City, CA 90232 310/ 280-0878, 800/ 948-7712 www.nolimitsspeaksout.org. Free individual auditory, speech and language therapy for dhh children between the ages of five-and-eighteen as well as a biweekly literacy program, computer training, weekly parent classes and a nationwide theatrical program.

Training and Advocacy Group (TAG) for Deaf & Hard of Hearing Children and Teens, Leah Ilan, Executive Director • 11693 San Vicente Blvd. #559, Los Angeles, CA 90049 • 310-339-7678 • tagkids@aol.com • www.tagkids.org. TAG provides exciting social opportunities through community service, field trips, weekly meetings, college prep and pre-employment workshops, guest speakers and parent-only workshops. site in the community. Group meetings and events offered to oral D/HoH children in 5th grade through high school seniors. USC Center for Childhood Communication (C3), 806 W. Adams Blvd, Los Angeles,CA 90007. USC C3 provides state of the art diagnostic audiology services, hearing aids, and implantable devices to children from birth to adulthood, speech language therapy and auditory verbal therapy, and educational counseling and support. Located on the campus of the John Tracy Clinic, USC C3 is part of the University of Southern California’s Keck School of Medicine. Otologic and surgical services are provided by John Niparko, M.D., and Rick Friedman, M.D. For appointments: 855-222-3093. Fax-213-764-2899. For inquiries regarding services: margaret. winter@med.usc.edu or call 213-764-2801.

ConnecticutCREC Soundbridge, 123 Progress Drive, Wethersfield, CT 06109 • 860- 529-4260 (voice/TTY) • 860-257-8500 (fax) • www.crec.org/soundbridge (website). Dr. Elizabeth B. Cole, Program Director. Comprehensive audiological and instructional services, birth through post-secondary, public school settings. Focus on providing cutting-

edge technology for optimal auditory access and listening in educational settings and at home, development of spoken language, development of self advocacy–all to support each individual’s realization of social, academic and vocational potential. Birth to Three, auditory-verbal therapy, integrated preschool, intensive day program, direct educational and consulting services in schools, educational audiology support services in all settings, cochlear implant mapping and habilitation, diagnostic assessments, and summer programs.

New England Center for Hearing Rehabilitation (NECHEAR), 354 Hartford Turnpike, Hampton, CT 06247 • 860-455-1404 (voice) • 860-455-1396 (fax) • Diane Brackett. Serving infants, children and adults with all degrees of hearing loss.Speech, language, listening evaluation forchildren using hearing aids and cochlear implants. Auditory-Verbal therapy; Cochlear implant candidacy evaluation, pre- and postrehabilitation, and creative individualized mapping. Post-implant rehabilitation for adults with cochlear implants, specializing in prelingual onset. Mainstream school support, including onsite consultation with educational team, rehabilitation planning and classroom observation. Comprehensive audiological evaluation, amplification validation and classroom listening system assessment. Florida Clarke Schools for Hearing and Speech Jacksonville, 9803 Old St. Augustine Road, Suite 7, Jacksonville, FL 32257 • 904-880-9001 • info@clarkeschools.org • www.clarkeschools.org. Alisa Demico, MS, CCC-SLP, LSLS Cert AVT, and Cynthia Robinson, M.Ed., CED, LSLS Cert. AVEd, Co-Directors. A member of the Option Schools network, Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Services include early intervention, toddler, preschool, pre-K, kindergarten, parent support, cochlear implant habilitation, and mainstream support. Summer Listening and Spoken language Program provides additional spoken language therapy for toddler and preschool-aged children. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia.

GeorgiaAtlanta Speech School—Katherine Hamm Center, 3160 Northside Parkway, NW Atlanta, GA 30327 • 404-233-5332 ext. 3119 (voice/TTY) • 404-266-2175 (fax) • scarr@atlspsch.org (email) • www.atlantaspeechschool.org (website). A Listening and Spoken Language program serving children who are deaf or hard of hearing from infancy to early elementary school age. Children receive language-rich lessons and highly individualized literacy instruction in a

nurturing environment. Teachers and staff work closely with parents to instill the knowledge and confidence children need to reach their full potential. Early intervention programs, audiological support services, auditory-verbal therapy, mainstreaming opportunities and independent education evaluations. Established in 1938.

Auditory-Verbal Center, Inc.—Atlanta, Macon, Teletherapy, 1901 Century Boulevard, Suite 20, Atlanta, GA 30345 • OFFICE: 404-633-8911 • EMAIL: Listen@avchears.org • WEBSITE: www.avchears.org AVC provides Auditory-Verbal Therapy that teaches children who are deaf and hard of hearing to listen and speak WITHOUT the use of sign language or lip reading. AVC provides AV therapy expertly by their Listening & Spoken Language Specialists (LSLSTM) through their two main locations in Atlanta and Macon but also virtually through teletherapy. Together, the LSLS and the parents work together to maximize each child’s listening and spoken language skills. AVC also has a full Audiology & Hearing Aid Clinic that provides diagnostic testing, dispensing and repair of hearing aids and cochlear implant mapping for adults. Additional offices: 2720 Sheraton Drive, Suite D-240, Macon, GA 31204, 478-471-0019 (voice)

IllinoisAlexander Graham Bell Montessori School (AGBMS) and Alternatives In Education for the Hearing Impaired (AEHI), www.agbms.org (website) • info@agbms.org (email) • 847-850-5490 (phone) • 847-1!50-5493 (fax) • 9300 Capitol Drive Wheeling, IL 60090 • AGBMS is a Montessori school educating children ages 15 months-12 who are deaf or hard of hearing or have other communicative challenges in a mainstream environment with hearing peers. Teachers of Deaf/Speech/Language Pathologist /Reading Specialist/Classroom Teachers emphasize language development and literacy utilizing Cued Speech. Early Intervention Services available to children under 3. AEHI, a training center for Cued Speech, assists parents, educators, or advocates in verbal language development for children with language delays or who do not yet substantially benefit from auditory technology.

Child’s Voice School, 180 Hansen Court, Wood Dale, IL 60191 • (630) 565-8200 (voice) • (630) 565-8282 (fax) • info@childsvoice.org (email) • www.childsvoice.org (website). Michele Wilkins, Ed.D., LSLS Cert. AVEd., Executive Director. A Listening and Spoken Language program for children birth to age 8. Cochlear implant (re) habilitation, audiology services and mainstream support services provided. Early intervention for birth to age three with parent-infant and toddler classes and home based services offered in Wood Dale and Chicago. (Chicago–phone (773) 516-5720; fax (773) 516-5721) Parent Support/Education classes provided. Child’s Voice is a Certified Moog Program.

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MarylandThe Hearing and Speech Agency’s Auditory/Oral Program: Little Ears, Big Voices, 5900 Metro Drive, Baltimore, MD 21215 • (voice) 410-318-6780 • (relay) 711 • (fax) 410-318-6759 • Email: hasa@hasa.org • Website: www.hasa.org • Jill Berie, Educational Director; Olga Polites, Clinical Director; Erin Medley, Teacher of the Deaf. Auditory/Oral education and therapy program for infants and young children who are deaf or hard of hearing. Early intervention services are available for children birth to age 3 and a preschool program for children ages 3 through 5. Cheerful, spacious, state-of-the-art classrooms located in Gateway School are approved by the Maryland State Department of Education. Services include onsite audiology, speech-language therapy, family education and support. Applications are accepted year-round. Financial aid available.

MassachusettsClarke Schools for Hearing and Speech/Boston, 1 Whitman Road, Canton, MA 02021 • 781-821-3499 (voice) • 781-821-3904 • info@clarkeschools.org • www.clarkeschools.org. Barbara Hecht, Ph.D., Director. A member of the Option Schools network, Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Services include early intervention, preschool, kindergarten, speech and language services, parent support, cochlear implant habilitation, and an extensive mainstream services program (itinerant and consulting). Children and families come to our campus from throughout Eastern and Central Massachusetts, Cape Cod, Rhode Island, Maine and New Hampshire for services. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia.

Clarke Schools for Hearing and Speech/Northampton, 45 Round Hill Road, Northampton, MA 01060 • 413-584-3450 • info@clarkeschools.org • www.clarkeschools.org. Bill Corwin, President. A member of the Option Schools network, Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Services include early intervention, preschool, day school through 8th grade, cochlear implant assessment, summer programs, mainstream services (itinerant and consulting), evaluations for infants through high school students, audiological services, and a graduate degree program in teacher education. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia.

MississippiDuBard School for Language Disorders, The University of Southern Mississippi, 118 College Drive #5215, Hattiesburg, MS 39406-0001 • 601-266-5223 (voice) • dubard@usm.edu (email) • www.usm.edu/dubard • Maureen K. Martin, Ph.D., CCC-SLP, CED, CALT, QI, Director. The DuBard School for Language Disorders is a clinical division of the Department of Speech and Hearing Sciences at The University of Southern Mississippi. The school serves children from birth to age 13 in its state-of-the-art facility. Working collaboratively with 20 public school districts, the school specializes in coexisting language disorders, learning disabilities/dyslexia and speech disorders, such as apraxia, through its non-graded, 11-month program. The DuBard Association Method®, an expanded and refined version of The Association Method, is the basis of the curriculum. Comprehensive evaluations, individual therapy, audiological services and professional development programs also are available. AA/EOE/ADAI.

Magnolia Speech School, Inc., 733 Flag Chapel Road, Jackson, MS 39209 – 601-922-5530 (voice), 601-922-5534 (fax)– anne.sullivan@magnoliaspeechschool.org–Anne Sullivan, M.Ed. Executive Director. Magnolia Speech School serves children with hearing loss and/or severe speech and language disorders. Listening and Spoken Language instruction/therapy is offered to students 0 to 12 in a home-based early intervention program (free of charge), in classroom settings and in the Hackett Bower Clinic (full educational audiological services, speech pathology and occupational therapy).Assessments and outpatient therapy are also offered to the community through the Clinic.

MissouriCID–Central Institute for the Deaf, 825 S. Taylor Avenue, St. Louis, MO 63110 314-977-0132 (voice) • 314-977-0037 (tty) • lberkowitz@cid.edu (email) • www.cid.edu (website) Lynda Berkowitz/Barb Lanfer, co-principals. Child- and family-friendly learning environment for children birth-12; exciting adapted curriculum incorporating mainstream content; Family Center for infants and toddlers; expert mainstream preparation in the CID pre-k and primary programs; workshops and educational tools for professionals; close affiliation with Washington University deaf education and audiology graduate programs.

The Moog Center for Deaf Education, 12300 South Forty Drive, St. Louis, MO 63141 • 314-692-7172 (voice) • 314-692-8544 (fax) • www.moogcenter.org (website) • Betsy Moog Brooks, Executive Director, bbrooks@moogcenter.org. Services provided to children who are deaf and hard-of-hearing from birth to 9 years of age. Programs include the Family School (birth to 3), School (3–9 years), Audiology (including cochlear implant programming), Teleschool, mainstream services, educational evaluations, parent education and support groups, professional workshops, teacher education, and student teacher placements. The Moog Center for Deaf Education is a Certified Moog Program.

New JerseyHIP of Bergen County Special Services, Midland Park School District, 41 E. Center Street, Midland Park, NJ 07432. • Contact Kathleen Treni, Principal (201) 343-8982, kattre@bergen.org. An integrated, comprehensive pre-K through 6th grade auditory oral program. Services include AV Therapy, Cochlear Implant Habilitation, Parent Education and Audiology services. STARS Early Intervention for babies, 0 to 3, with Toddler and Baby and Me groups available. SOUND SOLUTIONS consulting teacher services for mainstream students in North Jersey public schools. Contact Lisa Stewart, Supervisor at 201-343-6000 ext 6511 for information about teacher of the deaf, speech and audiology services to public schools. SHIP is the state’s only 7 through 12th grade auditory oral program. CART (Computer Realtime Captioning) is provided in a supportive small high school environment and trained Social Worker is onsite to work with social skills and advocacy issues.

Summit Speech School for the Hearing-Impaired Child, F.M. Kirby Center is an exclusively auditory-oral/auditory-verbal school for deaf and hard of hearing children located at 705 Central Ave., New Providence, NJ 07974 • 908-508-0011 (voice/TTY) • 908-508-0012 (fax) • info@summitspeech.org (email) • www.summitspeech.org (website) • Pamela Paskowitz, Ph.D., CCC-SLP, Executive Director. Programs include Early Intervention/Parent Infant (0-3 years), Preschool (3-5 years) and Itinerant Mainstream Support Services for children in their home districts. Speech and language, OT and PT and family support/family education services available. Pediatric audiological services are available for children birth-21 and educational audiology and consultation is available for school districts.

New YorkAnne Kearney, M.S., LSLS Cert. AVT, CCC-SLP, 401 Littleworth Lane • Sea Cliff, Long Island, NY 11579 • 516-671-9057 (Voice) • Kearney@optonline.net. Family-centered auditory-verbal speech therapy for infants, children and adults with any level of hearing loss.

Auditory/Oral School of New York, 3321 Avenue “M”, Brooklyn, NY 11234 • 718-531-1800 (voice) • 718-421-5395 (fax) • info@auditoryoral.org (email). Pnina Bravmann, Program Director. An Auditory/Oral Early Intervention and Preschool Program serving children with hearing loss and their families. Programs include: Early Intervention (center-based and home-based), preschool, integrated preschool classes with children with normal hearing, multidisciplinary evaluations, parent support, auditory-verbal therapy (individual speech, language and listening therapy), complete audiological services, cochlear implant (re)habilitation, mainstreaming, ongoing support services following mainstreaming.

Center for Hearing and Communication, 50 Broadway, 6th Floor, New York, NY 10004 • 917 305-7700 (voice) • 917-305-7888 (TTY) • 917-305-7999 (fax) • www.CHChearing.org (website).

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Florida Office: 2900 W. Cypress Creek Road, Suite 3, Ft. Lauderdale, FL 33309 • 954-601-1930 (Voice) • 954-601-1938 (TTY) • 954-601-1399 (Fax). A leading center for hearing and communication services for people of all ages who have a hearing loss as well as children with listening and learning challenges. Our acclaimed services for children include pediatric hearing evaluation and hearing aid fitting; auditory-oral therapy; and the evaluation and treatment of auditory processing disorder (APD). Comprehensive services for all ages include hearing evaluation; hearing aid evaluation, fitting and sales; cochlear implant training; communication therapy; assistive technology consultation; tinnitus treatment, emotional health and wellness; and Mobile Hearing Test Unit. Visit www.CHChearing. org to access our vast library of information about hearing loss and hearing conservation.

Clarke Schools for Hearing and Speech/New York, 80 East End Avenue, New York, NY 10028 • 212-585-3500 • info@clarkeschools.org • www.clarkeschools.org. Meredith Berger, Director. A member of the Option Schools network, Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Clarke’s New York campus is located on the Upper East Side of Manhattan and serves children age birth-5 years old from New York City and Westchester County. Clarke is an approved provider of early intervention evaluations and services, service coordination, and pre-school classes (self-contained and integrated). There are typically little or no out of pocket expenses for families attending Clarke New York. Our expert staff includes teachers of the deaf/hard of hearing, speech language pathologists, audiologists, social workers/service coordinators and occupational and physical therapists. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia. Cleary School for the Deaf, 301 Smithtown Boulevard, Nesconset, NY 11767 • 631-588-0530 (voice) • www.clearyschool.org • Jacqueline Simms, Executive Director. Auditory Oral Programs include Parent-Infant (birth-3years) and Preschool (3-5 years). Offers Teacher of the Deaf, Speech Therapy & AV therapy. The primary focus of the Auditory-Oral Program is to develop students’ ability to “listen to learn” along with developing age appropriate speech, language, and academic skills. These programs offer intensive speech therapy services with a goal to prepare students for life long learning. Additional services: Autism Resource, Audiological, Music, Art, Library, OT, PT and Parent Support.

Mill Neck Manor School for the Deaf, 40 Frost Mill Road, Mill Neck, NY 11765 • (516) 922 – 4100 (voice). Francine Atlas Bogdanoff, Superintendent. State-supported school: Infant Toddler Program focusing on parent education and support including listening and spoken language

training by a speech therapist and TOD. Certified AVEd and Audiological services onsite, integrated auditory-verbal preschool and kindergarten programs; comprehensive curriculum utilizes play, music, literacy and hands on experiences to promote listening and spoken language skills and academic standards. Speech, occupational and physical therapies, as well as counseling and Cochlear Implant MAPpings, are available onsite.

Rochester School for the Deaf, 1545 St. Paul Street, Rochester, NY 14621 • 585-544-1240 • 866-283-8810 (videophone) • info@RSDeaf.org • www.RSDeaf.org • Antony A. L. McLetchie, Superintendent/CEO. Serving Western and Central New York State, Rochester School for the Deaf (RSD) is an inclusive, bilingual school where children who are deaf and hard of hearing and their families thrive. Established in 1876, RSD goes above and beyond all expectations to provide quality Pre-K through 12th grade academic programs, services and resources to ensure a satisfying and successful school experience for children with hearing loss.

St. Joseph’s School for the Deaf, 1000 Hutchinson River Pkwy., Bronx, NY 10465 • 718-828-9000 (Voice) • 718-828-1671 (TTY) • 347-479-1271 (Video Phone) • www.sjsdny.org. Debra Arles, Executive Director. SJSD has a long history of providing academically rich programs for students with hearing loss from birth to 8th grade. All students receive individual and/or small group speech therapy sessions. Individual and sound field FM systems are utilized throughout the school day. Onsite audiological services (assessments and amplification fitting/maintenance) are available in addition to occupation and physical therapies, and counseling. Our Parent-Infant Program offers individual family sessions and a weekly group session, and emphasizes language acquisition, development of spoken language and auditory skills. In addition, our vibrant, multi-lingual Parent Education program provides practical information and peer support to empower parents raising a child with hearing loss. Sunshine Cottage School for Deaf Children, 603 E. Hildebrand Ave., San Antonio, TX 78212; 210/824-0579; fax 210/826-0436. Founded in 1947, Sunshine Cottage, a listening and spoken language school promoting early identification of hearing loss and subsequent intervention teaching children with hearing impairment (infants through high school.) State-of-the-art pediatric audiological services include hearing aid fitting, cochlear implant programming, assessment of children maintenance of campus soundfield and FM equipment. Programs include the Newborn Hearing Evaluation Center, Parent-Infant Program, Hearing Aid Loaner and Scholarship Programs, Educational Programs (preschool through fifth grade on campus and in mainstream settings), Habilitative Services, Speech Language Pathology, Counseling, and Assessment Services. Pre- and postcochlear implant assessments and habilitation.

Accredited by the Southern Association of Colleges and Schools Council on Accreditation and School Improvement, OPTIONschools International, and is a Texas Education Agency approved non-public school. For more information visit www.sunshinecottage.org.

North CarolinaCASTLE- Center for Acquisition of Spoken Language Through Listening Enrichment, 5501 Fortunes Ridge Drive, Suite A, Chapel Hill, NC 27713 • 919-419-1428 (voice) • http://www.med.unc.edu/earandhearing/castle (website) • CASTLE is a part of the UNC Ear & Hearing Center and the UNC Pediatric Cochlear Implant Team, Our mission is to provide a quality listening & spoken language program for children with hearing loss; empower parents as primary teachers and advocates; and train and coach specialists in listening and spoken language. We offer toddler classes, preschool language groups, Auditory-Verbal parent sessions, and distance therapy through UNC REACH. Hands-on training program for hearing-related professionals/university students.

OHIOOhio Valley Voices • 6642 Branch Hill-Guinea Pike, Cincinnati, OH 45140 • 513-791-1458 (voice) • 513-791-4326 (fax) • mainoffice@ohiovalleyvoices.org (email) • www.ohiovalleyvoices.org (website). Ohio Valley Voices’ mission is to teach children with hearing loss to listen and talk. Our primary goal is for children with hearing impairment to leave our program speaking within normal limits and reading at or above grade level. Our vision is for all children with hearing loss to have a bright future with endless possibilities. We provide early intervention, oral deaf education through 2nd grade, intensive speech/ language therapy, parent education, and support groups for families. We offer a 1:3 therapist to child ratio and complete audiology services, including daily maintenance/repairs on children’s cochlear implants and/or hearing aids.

Millridge Center/Mayfield Auditory-Oral Program, 950 Millridge Road, Highland Heights, OH 44143-3113; phone 440/995-7300/fax 440/995-7305; www.mayfieldschools.org. Mrs. Elizabeth A. Scully, Principal. Auditory/oral program with a full continuum of services, birth to 22 years of age. Serving 31+ public school districts in northeast Ohio. Parent-Infant-Toddler Program; preschool with typically developing peers; parent support; individual speech, language, and listening therapy; audiological services; cochlear implant habilitation; and mainstreaming in the general education classrooms of Mayfield City School District.

OklahomaHearts for Hearing, 3525 NW 56th Street, Suite A-150, Oklahoma City, OK 73112 • 405-548-4300 • 405-548-4350(Fax) • Comprehensive hearing health care for children and adults with an emphasis on listening and spoken language outcomes. Our family-centered team includes audiologists, LSLS Cert. AVTs, speech-language pathologists, physicians and educators working closely

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with families for optimal listening and spoken language outcomes. Services include newborn hearing testing, pediatric and adult audiological evaluations, hearing aid fittings, cochlear implant evaluations and mapping. Auditory-verbal therapy as well as cochlear implant habilitation is offered by Listening and Spoken Language Specialists (LSLS®), as well as an auditory-oral preschool, parent-toddler group and a summer enrichment program. Continuing education and consulting available. www.heartsforhearing.org.

OREGONButte Publications, Inc., P.O. Box 1329, Hillsboro, OR 97123 (866)312-8883 www.ButtePublications.com Butte Publications is an educational publisher focused on the needs of deaf or hard-of-hearing students, their families, teachers and other professionals. At Butte, you'll find time tested as well as new titles covering language skill building, professional resources, and other interesting and informative publications. Visit our website to see the scope of our line.

PennsylvaniaClarke Schools for Hearing and Speech/Pennsylvania, 455 South Roberts Road, Bryn Mawr, PA 19010 • 610-525-9600 • info@clarkeschools.org • www.clarkeschools.org. Judith Sexton, MS, CED, LSLS Cert AVEd, Director. A member of the Option Schools network, Clarke Schools for Hearing and Speech provides children

who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Locations in Bryn Mawr and Philadelphia. Services include early intervention, preschool, parent education, individual auditory speech and language services, cochlear implant habilitation for children and adults, audiological services, and mainstream services including itinerant teaching and consulting. Specially trained staff includes LSLS Cert. AVEd and LSL Cert. AVT professionals, teachers of the deaf, special educators, speech language pathologists and a staff audiologist. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia.

Delaware County Intermediate Unit # 25, Hearing and Language Programs, 200 Yale Avenue, Morton, PA 19070 • 610-938-9000, ext. 2277, 610-938-9886 (fax) • sdoyle@dciu.org • Program Highlights: A publicly funded program for children with hearing loss in local schools. Serving children from birth through 21 years of age. Teachers of the deaf provide resource room support and itinerant hearing therapy throughout Delaware County, PA. Services also include audiology, speech therapy, cochlear implant habilitation (which includes LSLS Cert. AVT and LSLS Cert. AVEd), psychology and social work.

DePaul School for Hearing and Speech, 6202 Alder Street, Pittsburgh, PA 15206 • 412-924-1012 (voice) • 412-924-1036 (fax) • www.depaulhearingandspeech.org (website) • nl@depaulhearingandspeech.org (email) • Mimi Loughead, Early Childhood Coordinator. DePaul School is the only school in the western Pennsylvania tri-state region that provides Listening and Spoken Language (LSL) education to children who are deaf or hard of hearing. DePaul School serves children in Pennsylvania and from Ohio and West Virginia. A State Approved Private School, most programs are tuition-free to approved students. DePaul School provides early intervention services for children (birth to age 5); a center-based toddler program (ages 18–36 months); a preschool program (ages 3–5) and a comprehensive academic program grades K-8. DePaul School provides clinical services including audiology, Auditory-Verbal and speech therapy, cochlear implant MAPping and habilitation, physical and occupational therapy, mainstreaming support and parent education and support programs. Most children who participate in DePaul School’s early intervention programs gain the Listening and Spoken Language (LSL) skills needed to succeed and transition to their neighborhood schools by first grade.

Tucker Maxon Oral School, 2860 SE Holgate Blvd., Portland, OR 97202.(503) 235-6551. info@tuckermaxon.org. www.tuckermaxon.org. Glen Gilbert, Executive Director. Linda Goodwin,

C I Dlisten talk read succeed

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Principal. Founded in 1947, Tucker-Maxon is an OPTION-accredited school offering early intervention, tele-intervention, preschool, and K-5 education for deaf and hearing-impaired children with a focus on listening and speaking. On-site audiology and speech-language pathology provide cochlear implant and hearing aid assessment and assistance. Our collaborative, family-centered approach develops children’s listening and speaking abilities while supporting the family in providing a language-rich environment at home. Our small classes with an average 8:1 student-to-teacher ratio and co-enrollment with typically hearing children results in improved listening and speaking skills. Art, Music and PE programs augment our focus on building communication, problem-solving and scholastic achievement.

South Carolina The University of South Carolina Speech & Hearing Research Center, 1224 Sumter Street Suite 300, Columbia SC 29201. (803) 777-2614 (Voice). (803) 253-4153 (Fax). Sph.sc.edu/shc/The center provides audiology services, speech-language therapy, adult aural (re) habilitation therapy, and auditory-verbal therapy. Our audiology services include comprehensive diagnostic evaluations, hearing aid evaluations and programming. The University also provides a training program for AV therapy and cochlear implant management for professional/university students. Contacts for the AVT or CI programs include Rebecca Brashears (803-777-1698), Jason Wigand (803-777-2642), Gina Crosby-Quinatoa (803-777-2671), Jamy Claire Archer (803-777-1734). Appointment’s (803-777-2630). Additional information contact Danielle Varnedoe-Center Director (803-777-2629) daniell@mailbox.sc.edu.

TennesseeChild Hearing Services (CHS) - University of Tennessee Health Science Center, 578 South Stadium Hall • Knoxville, TN 37996 • 865-974-5451 (voice) • 865-974-1793 (fax) • http://www.uthsc.edu/allied/asp/hsc/chs.php (website) • Eclark1@uthsc.edu (email) • Emily Noss, M.A. CCC-SLP • CHS provides aural re/habilitation services for children who are deaf or hard of hearing ranging in age from birth-21. Group and individual treatment as well as aural/oral communication assessments, pre and post cochlear implant assessments, auditory training, adult cochlear implant training, and parent guidance are offered. The objectives of CHS are for each child to develop listening and spoken language skills commensurate with their peers. CHS is also a training program for audiology and speech-language pathology students.

Memphis Oral School for the Deaf, 7901 Poplar Avenue, Germantown, TN 38138 • 901-758-2228 (voice) • 901-531-6735 (fax) • www.mosdkids.org (website) • tschwarz@mosdkids.org (email). Teresa Schwartz, Executive Director. Services: Family Training Program (birth-age 3), Auditory/Oral Day School (ages 2-6), Audiological Testing, Hearing Aid Programming, Cochlear Implant Mapping and Therapy, Aural (Re)Habilitation, Speech-Language Therapy, Mainstream Service.

Weingarten Children's Center is the new name for Jean Weingarten Peninsula Oral School for the Deaf located in Redwood City, California. The new name reflects our expansion of services to children who are deaf and hard of hearing and their families. Our programs include:

Vanderbilt Bill Wilkerson Center - National Center for Childhood Deafness and Family Communication, Medical Center East South Tower, 1215 21st Avenue South, Nashville, TN 37232-8718 • www.mc.vanderbilt.edu/VanderbiltBillWilkersonCenter (web). Fred Bess, Ph.D., Director NCCDFC fred.h.bess@vanderbilt.edu; Michael Douglas, M.S., Principal, Mama Lere Hearing School William.m.douglas@vanderbilt.edu; Lynn Hayes, Ed.D., Director, Master’s in Education of the Deaf Program lynn.hayes@vanderbilt.edu; Anne Marie Tharpe, Ph.D., Associate Director of Education, NCCDFC anne.m.tharpe@vanderbilt.edu. The National Center for Childhood Deafness and Family Communication (NCCDFC) at the Vanderbilt Bill Wilkerson Center houses a comprehensive program of research, education, and service for infants and children (birth through 18 years) with hearing loss and their families. Early intervention services include newborn hearing screening, full range of pediatric audiology services (diagnostic services, hearing aid fittings, and cochlear implant program), infant-family training, and toddler group. The Mama Lere Hearing School provides preschool educational services for listening and spoken language development. Telepractice services, including deaf education, speech-language intervention, audiology services, and professional coaching are available. The Department of Hearing and Speech Sciences offers an innovative, highly-ranked, interdisciplinary graduate program for audiology, speech-language pathology, and deaf education students. The NCCDFC is engaged in cutting-edge, basic and applied research in the area of childhood hearing loss.

TexasCallier Center for Communication Disorders/UT Dallas, Callier - Dallas Facility: 1966 Inwood Road, Dallas, TX 75235 • Main number: 214-905-3000 • Appointments: 214-905-3030. Callier-Richardson Facility: 811 Synergy Park Blvd., Richardson, TX 75080 • Main number: 972-883-3630 • Appointments: 972-883-3630 • calliercenter@utdallas.edu (email) • www.utdallas.edu/calliercenter. For half a century, the Callier Center has been dedicated to helping children and adults with speech, language and hearing

disorders connect with the world. We transform lives by providing leading-edge clinical services, conducting innovative research into new treatments and technologies, and training the next generation of caring clinical providers. Callier provides hearing services, Auditory-Verbal therapy, and speech-language pathology services for all ages. Audiology services include hearing evaluations, hearing aid dispensing, assistive devices, protective devices and tinnitus therapy. We are a partner of the Dallas Cochlear Implant Program, a joint enterprise among the Callier Center, UT Southwestern Medical Center and Children’s Medical Center. Callier specializes in cochlear implant evaluations and post-surgical treatment for children from birth to 18 years. Our nationally accredited Child Development Program serves children developing typically and allows for the inclusive education of children with hearing impairments.

The Center for Hearing and Speech, 3636 West Dallas, Houston, TX 77019 • 713-523-3633 (voice) • 713-874-1173 (TTY) • 713-523-8399 (fax) - info@centerhearingandspeech.org (email) www.centerhearingandspeech.org (website) CHS serves children with hearing impairments from birth to 18 years. Services include: auditory/oral preschool; Audiology Clinic providing comprehensive hearing evaluations, diagnostic ABR, hearing aid and FM evaluations and fittings, cochlear implant evaluations and follow-up mapping; Speech-Language Pathology Clinic providing Parent-Infant therapy, Auditory-Verbal therapy, aural(re) habilitation; family support services. All services offered on sliding fee scale and many services offered in Spanish.

UtahSound Beginnings at Utah State University, 2620 Old Main Hill • Logan, UT • 84322-2620 • 435-797-9235 (voice) • 435-797-7519 (fax) • www.soundbeginnings.usu.edu • Ali Devey, MA, Sound Beginnings Program Coordinator, ali.devey@usu.edu • Kristina Blaiser, Ph.D., CCC-SLP, kristina.blaiser@usu.edu • Listening and Spoken Language Graduate Program. A comprehensive listening and spoken language program serving children with hearing loss and their families. Services include early intervention, parent training, toddler and preschool

DIRECTORY OF SERVICES

40 WWW. AGBELL .ORG

classrooms, pediatric audiology, tele-intervention and individual therapy. The Department of Communicated Disorders offers an interdisciplinary Listening and Spoken Language graduate training program in Speech-Language Pathology, Audiology, and Deaf Education. Sound Beginnings partners with the Utah School for the Deaf.

WisconsinCenter for Communication Hearing & Deafness, 10243 W. National Avenue • West Allis, WI 53227 • 414-604-2200 •414-604-7200(Fax) • www.cchdwi.org • Amy Peters Lalios, M.A,. CCC-A, LSLS Cert. AVT, Director, Therapy Services. Private non-profit agency, near Milwaukee, providing quality, state-of-the-art comprehensive therapy services to individuals, of all ages, who have hearing loss. Highly qualified professionals at CCHD include: LSLS certified practitioners; speech-language pathologists (including bilingual-Spanish); audiologists; teachers of the deaf and hard of hearing; and social worker. Services include family-focused, culturally responsive individualized early intervention; parent education; auditory-verbal therapy; tele-therapy via ConnectHear Program; speech-language therapy; toddler communication groups with typically hearing peers; pre- post cochlear implant therapy for all ages; specialized instruction; consultations; professional mentoring as well as agency

related programs, resources, ongoing educational and parent-to-parent events.

INTERNATIONAL

CanadaChildren’s Hearing and Speech Centre of British Columbia , 3575 Kaslo Street, Vancouver, British Columbia, V5M 3H4, Canada • 604-437-0255 (voice) • 604-437-0260 (fax) • www.childrenshearing.ca (website) • Janet Weil, Principal and Executive Director, jweil@childrenshearing.ca. Celebrating our 50th year, our listening and spoken language clinical educational centre serves children and families from birth through Grade 12 including audiology, SLP, OT, First Words family guidance, preschool and primary classes, itinerant services and video-conferencing/tele-therapy.

Montreal Oral School for the Deaf, 4670 St. Catherine Street West; Westmount, QC; Canada H3Z 1S5 • 514-488-4946 (voice/tty) • 514-488-0802 (fax) • info@montrealoralschool.com (email) • www.montrealoralschool.com (website). Parent-Infant program (0-3 years old). Full-time educational program (3-12 years old). Mainstreaming program in regular schools (elementary and secondary). Audiology, psychosocial and other support services.

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LIST OF ADVERTISERSAdvanced Bionics Corporation .............................................................4

CapTel .............................................................................Inside Back Cover

Central Institute for the Deaf ...............................................................38

Clarke Schools for Hearing and Speech .........................................15

Cochlear Americas ......................................................................................6

Ear Technology Corp. (Dry & Store) ................................................ 14

MED-EL Corporation ............................................................Back Cover

National Technical Institute for the Deaf—RIT.............................34

Oticon ............................................................................Inside Front Cover

Rosie's Ranch ..............................................................................................27

St. Joseph Institute for the Deaf ........................................................23

University of Texas Health Science Center ...................................32

Weingarten Children's Center .............................................................39

AG Bell Learn and Earn...........................................................................40

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